Grey's Gift

Reflections

2011-08-04T21:09:00.003-05:00

Have you ever had a movie change your life? Obviously, nothing can change you if you're not ready for it. But in my mind, every action has a reason. It's almost as if the last two years led me to a scene in A Single Man. The scene is below. I'd ask you to watch it before you continue reading.

A Single Man is about a college professor in the 60's who has suddenly lost his lover of 16 years. His heart is broken and he is able to share his grief with very few. After 8 months of waking up alone, he decides that today will be his last day. The movie follows him through that day, which seems to be full of things he has never noticed before - the color of a rose, the new shoes of a child. As he takes everything in for the last time, everything seems so different, so alive.

The clip above is one of the first scenes. As I watched it I cried. "It takes time in the morning for me to become George," he says as he puts on his armor to face the day. "Looking in the mirror staring back at me is not so much a face, as the expression of a predicament. Just get through the god damned day."

I cried because I felt connected to him. I cried because he was me.

For the last 2 1/2 years I've stumbled through in a fog, allowing most around me to pass me by. And after watching that movie I decided that I just didn't want to be that person anymore. It was like a breathe of fresh air, the realization that only I could make that change, that I didn't have to be the grieving mother that others, including myself, expected me to be. It was my choice as to whether or not I wanted to continue to put on my armor every morning. It was my choice as to whether or not I would continue to let relationships bounce off it.

Reflections never lie. I think the best advice I've ever been given was to surround myself with others who are a reflection of me. This can go really bad if you don't like what you see in yourself.

I have friends who have walked this journey of grief with me from the very beginning and continue to love me. I have friends who have jumped in afterwards and started loving me anyways. I've used them all to get where I am today. It's taken me a while to figure out that those who have left had to, because I was no longer a reflection of them. It's taken me a while to figure out that everyone is brought into my life for a reason, a lesson for me to learn. There's no need for me to be angry at their absence. Learn my lesson. Move on. I don't want to look at my reflection in a friend's eyes and see doubt, resentment, or crazy. It just takes too much energy to try to fix. There is no fixing them, only me.

My current reflections:
A mother fighting for her son's life
A mother fighting for other children's lives because of the son she lost
A runner with fast, pink shoes
A speech pathologist living in Hanna Barbera's world
A boy who never takes no for an answer
A young politician
And of course, George.

I draw bits and pieces from them all, in hopes that someone looks at me and wants to have me as their reflection.

The movie ends with this closing monologue:
"A few times in my life I’ve had moments of absolute clarity, when for a few brief seconds the silence drowns out the noise and I can feel rather than think, and things seem so sharp and the world seems so fresh. It’s as though it had all just come into existence. I can never make these moments last. I cling to them, but like everything, they fade. I’ve lived my life on these moments. They pull me back to the present, and I realize that everything is exactly the way it’s meant to be."

Please Take Every Step With Me

2011-05-31T21:50:00.004-05:00

Every child, in every state, needs to be tested for every disease possible. It is estimated that thousands of children die or become permanently disabled every year because they are born in the wrong state.

One of those children was my son, Grey. Greyson died of Krabbe Disease six days shy of his first birthday. Because of his loss, my family and friends, with the help of Hunter's Hope, fought tirelessly to establish "Greyson's Law". Greyson's Law (HB 1795) strives to increase the number of diseases screened for in Texas and has established a Newborn Screening Advisory Committee to help keep Texas proactive in the protection of it's littlest Texans.

In addition to bringing awareness to Universal NBS, Hunter's Hope provides the Krabbe community with the hope for a cure. Hunter's Hope provides us with amazing doctors that fight for our children every day. Research is so imperative! I'd hate to think of what Seth might be like today if not for the advances in PKU. . . because of research. With all three of my sons being carriers of Krabbe, I continue to hope for such advances.

Please join me as I continue to educate and advocate for the importance of Universal Newborn Screening. Take every step with me, in memory of Grey.

Click here to sponsor me.

This Spring

2011-05-16T19:54:00.005-05:00

At times, I really miss blogging. My friend tells me of her "God Box", a place where she can place her frustrations, let them go, give them up. A place she can revisit and realize that all was not as bad as it seemed. I think for me, maybe my blogging is my "God Box". Sometimes I go back; two years ago today . . . and although most times I cry myself through my read, I realize how far I have come.

So let's catch up -

Spring brought baseball for the two younger boys. Some weeks we were up at the fields 5 of the 7 days of the week. But busy is good, always good. The fields always bring back memories of Grey. I can see him trying to catch his breath as the warm wind tousled his hair. It's always a little hard, starting a new season without Grey in tow. I can picture him playing in the stands, running with the other kids, becoming a filthy mess - until I remind myself, that could have never been my Grey.

Bill coached Riley's team for the 2nd season, and I must say, I was very proud of him. Our best friends' son was on Seth's team, which always makes the season more fun. We always feel safe with them around. With a new team brings new people, people who have never known Grey. That's hard. We never want people to feel sorry for us. But introducing our family without Grey just feels wrong. It's hard to explain.

Luke turned 16 last week. That makes me feel old. He is enjoying ROTC and even got a national award. Now if I could only get him to turn in his homework!

Bill continues to work on legislation for newborn screening. He's doing an amazing job! I wouldn't even know where to start with all he's done and accomplished. I have to be honest though, the first time this Spring when he starting talking legislation - well, I completely lost it! The thought of going through all the ins and outs of politics makes me crazy. But Bill is on top of it, continuing to tell Grey's story to everyone he meets. I, on the other hand, would do anything to make him all mine again. Politics gets so personal. When legislators say no to NBS, it feels like they're choosing to discount Grey's trial. It makes me furious. It hurts to breathe. But I'm trying, trying to help Bill out in the ways I know how to.

I'm always accessing my grief. Lately I've been realizing just how much I actually suppress it. I was riding with my mom the other day, coming home after having lunch out with her. We came home a different way and we passed the funeral home where they took Grey to be cremated. My mom knows the owner very well, and she told me that when she thanked him for taking care of Grey, several months after the actual event, that he had no idea that the little baby he took care of was mom's grandson. He told her how much Grey touched him, by just the sweetness of his broken shell. And in that moment, Grey became my little boy again. It all came rushing back at me and I did everything I could to hold back the tears. To think of him there, with a mere acquaintance, it hurt my heart. As I tried to contain myself, I realized that it was much easier when Grey was the face of a cause than when I let him become my baby again.

Grey continues to touch people beyond my belief. Just this last week, two people have told me stories of how Grey has touched them. It does my heart good. It helps me to heal. At times, I don't stop to think how his loss has affected others, or that it has affected others at all. And then somebody will tell me a story, and the wonder of his spirit wraps around me, letting me know that he will never be forgotten.

Please Help Us Save Texas Newborns!

2011-03-21T17:27:00.004-05:00

Newborn screening is under attack in Texas! Two bills are in pending in the Texas legislature that will radically change the way newborn screening is conducted. We need stop these bills to help save babies' lives! Please sign, even if you don't live in Texas.

Newborn screening is a test done on every baby in the country to test for certain diseases that result in death, severe mental retardation, disability or trauma if not detected early in life and treated. A few drops of blood are taken from the baby's heel shortly after birth and sent to states' public health laboratories for testing. These tests save the lives of thousands of babies nation-wide every year.

HB 2110 will make Texas the only state in the country to require parents to opt-in for screening services. There is no provision requiring education for prospective parents about newborn screening. This new opt-in policy and the lack of prenatal education about newborn screening will result in children missing the screening tests and suffering unnecessarily, becoming disabled, or dying.

HB 411 (and its companion bill in the Senate, SB 507) contains provisions that will make it very difficult for the state to add in diseases to the newborn screening program. Research is now occurring for muscular dystrophy, lysosomal storage disorders, certain ataxias, SCID and many more diseases. These babies deserve saving too! This bill needs amending to add provisions for prenatal education about newborn screening and state storage and use of leftover samples to save more babies' lives.

Newborn screening is an amazing program that saves countless tiny lives every year. Don't let Texas' babies suffer! Sign this petition and tell the Texas legislators to put babies first!

Sign this petition and let them know you oppose HB 2110, HB 411 and SB 507!

Convinced

2011-01-01T22:35:00.002-06:00

Don't talk to me about statistics. It seems as though, as a family, we have always defied the odds.

Once Bill and I found out that we were not only carriers of Krabbe Disease, but that we possessed the same exact mutation, we knew that our next step was to find out the boys' carrier status. We started the process over Christmas Break.

I was convinced that none of the boys would be carriers, convinced because of a dream I had. Shortly after Grey died I had a very vivid dream. I was holding Grey in my arms, sitting in our favorite chair. I could feel his hand stroking my cheek. I could feel his hair as I ran my fingers through it. He spoke to me, "I took it all Momma." And in my mind, I was convinced that Grey had made a deal with God, that he took on Krabbe, so that it would never touch our family again.

When the results came in yesterday, I was still convinced. It would be gone. Grey had taken it all for us. Bill called. "All three boys, Honey. They're all carriers."

All carriers?! Are you kidding me?! Seth & Riley had a 50% chance of being a carrier. Luke only had a 25% chance. But what were the chance of all three being carriers? And what were the chances that we ALL have the exact same mutation, T513M?

Every family has a purpose. At least we know what ours is. We should be thankful, even consider ourselves lucky, that Grey was the only one who actually had Krabbe.

Life is all about perspective, right?

A Christmas Song

2010-12-20T19:02:00.003-06:00

Happy Birthday & Merry Christmas Grey Grey.

"I came to shed a little light on this darkening scene."

What Are The Odds?

2010-10-10T20:12:00.004-05:00

Many of you know that when we tried to get a confirmation of Krabbe through Grey's blood, the blood was destroyed by the lab on accident and that Grey died before they were able to let us know.

And many of you know that our confirmation of Krabbe came weeks after Grey's death through an autospy revealing globoid cells in the white matter of his brain.

What many of you may not know its that we were told by a doctor at our first HH Symposium that globoid cells in white matter does not always mean that the baby had Krabbe.

As you can imagine, as the words rolled off that doctor's tongue my heart sank and a million questions went through my head.

What if he didn't have Krabbe?

What could he have had?

What if he was curable?

For 14 months I have been searching for a doctor that would be willing to test Bill and I to confirm our carrier status. Both Bill and I would have to be carriers of Krabbe for Grey to have had it. The task would prove to be very difficult, since we have nothing left of Grey to test. There are over 100 different mutations for Krabbe. Without a starting point, the combinations for Bill and I could be endless.

Our blood arrived to the doctor last Monday. By Wednesday, I received an email from her saying the results had been faxed to my family doctor, who just happened to close at noon on Wednesdays.

Again, 1,000 questions stirred in my head.

Why did Grey present so differently?

Why did he progress so quickly?

Why was he so social, for so long?

Could I live with myself knowing that, if one of us was not a carrier, I would never know what Grey had?

Thursday brought our final confirmation. Grey, if fact, died of Krabbe Disease. Bill and I were both carriers.

But, there is more to the story . . . as there has always seemed to be. Grey did nothing half way.

There are several combinations of mutations that one can have to acquire Krabbe, the most common being the 30 kb deletion. Most Krabbe kids have at least one of the deletion, while many have two and are homozygous. They can also have one 30 kb deletion with any combination of one of the 100 mutations with it.

The final way one can get Krabbe is to be homozygous with the same mutation. That means that one mutation comes from the dad, and the exact same mutation comes from the mom. It seems to be fairly rare, to have the exact same mutation, of over 100, from the mom and dad.

I have the T513M mutation.

Bill has the T513M mutation.

And although we had no blood, or hair, to test Grey, we now know that Grey was homozygous for the T513M mutation.

Amazing.

Just another affirmation that it was all in God's plan.

Giraffes, Pumpkin Pie, And Ninjas

2010-09-05T21:13:00.006-05:00

Again, it's been a long time since I have blogged. Part of me fears that if I allow myself to blog, I'll slip back into the void of Grey. This has always been Grey's blog. But tonight, when I logged in, I noticed that the leopard yellow background that was Grey to a tee, had been deleted. It felt as though another little part of him had been taken away. I've searched for hours, trying to find another background that would suit him. I've settled for a Fall one.

It is that time of the season, the season that begins our loss. I don't think it will ever matter how many years pass, this time of year will always be that season. I have taken the approach as to face it head on, and fill it with the things that made Grey happy.

Like ~
It's only the beginning of September, but last weekend, which was August, Riley asked if we could put up the Halloween decorations. I love Halloween. Ry loves Halloween. Grey loved Halloween. It was really the only holiday that he really celebrated. His first Christmas he was only weeks old. But you could see in his eyes that he got Halloween!

The days leading up to Halloween were a whirlwind. The day before was his first and only admission to the hospital for "failure to thrive". Halloween day brought test after test, including a spinal tap (while he was awake), and the news that hope was grim. With that, we decided to discharge him and take him home.

But nothing could slow Grey's spirit down, not even his broken body. Halloween evening he was dressed as a giraffe, smiling and laughing at his brothers, as we strolled him down the street to Trick-Or-Treat. That night, Grey gave me such a gift, the gift of a single moment where nothing else mattered except that smirk of his and his wide eyes, his body disguised for just a few hours. I can't explain it, but it was like he knew I'd need it, and his sweetest burned it forever in my mind.

Like ~
No-Bake Pumpkin Pie. Grey would eat my pumpkin pie for breakfast, lunch, and dinner if I would have let him. And I did. I even remember Bill calling me once while I was at school. "We're out of pumpkin pie and somebody is pissed (Sorry Mom I know you hate that word, but Bill said it, not me)! He won't eat anything else." That was Grey, stubborn to the core. He ate pumpkin pie up until 5 days before he died. It was the last thing he ate. Oddly, that makes me smile.

I take comfort in knowing, that as Ry and I put out our decorations, he too was missing Grey. "Mom, what do you think Grey will be for Halloween this year?" His question stopped me dead in my tracks as I tried not to cry. Do you know what it feels like, as a parent, to no longer really know what your son likes? Wow! I couldn't answer him with anything other that an, "I don't know." His question bothered me all day. It made me feel empty, like a piece of me was lost. I called Bill. I called Mom. No answers from them either. Hours later I text my bff with Ry's question. Minutes later she responded.

Grey is going to be a ninja angel this year.

And with that simple response, I felt my son again, through the love of his Godmother, already celebrating Halloween with us.

Heavy On My Heart

2010-07-19T16:58:00.007-05:00

As our trip to the Hunter's Hope Family & Medical Symposium approaches, I find myself preparing my heart for the trip. Last year, we were the new family, missing our little boy, trying to describe him to those who were never lucky enough to meet him. It'll be bittersweet, seeing my Krabbe family, and unfortunately meeting more. I know I'll see Grey in a few little bodies. I know I'll see fear and uncertainty in parents' eyes. But this year, it's my goal to show new families that life after loss does exist.

First, I have to send out a HUGE thank you to all those who helped us to raise funds for the Hunter's Hope Every Step Family Walk. At last glance, Grey's Gifts had raised $2025! Your love for our little boy, even 19 months later, still amazes me.

Grey has been heavy on my heart lately, and I'm sure it's because I see him every time I ask for a donation, every time I think of our upcoming trip. It was a nice break to go to a PKU clinic for Seth this past Saturday. Different kid, different disease. As I sat and listened to Seth's doctor speak, I realized just how important research is and just how lucky we are. If Seth had been born 30 years earlier, he would be a very different child. The advances in PKU, just in the last 11 years, have been amazing! My hope is that the day will come when Krabbe will be just as treatable as PKU. But there needs to be more research on this little-known, yet devastating disease. This last month I, along with many of you, did what I could to help fund that much needed research. Again, I can't thank you enough for taking "every step" of this journey with me.

I will post pictures of our trip on Facebook throughout the week. Bill & I have promised not to take our computers with us (iPhones don't count). Keep us in your thoughts for an easy travel and a relaxing trip. Even though we were at the Symposium last year, most of our trip seems to have been lost in the fog, being so fresh in Grey's loss. This year we welcome the break as we continue on our path to heal.

On another note, the Texas State Department Of Health Services has updated it's site to include the Newborn Screening Advisory Committee. It's amazing, yet heartbreaking, all at the same time. To see Grey's name, to realize that this was his creation, I can't even start to explain how I am feeling. I am so proud of Grey and Bill, through his appointment as Chair of his son's committee. I am so lucky that both of them are a part of me.

Grey's Quilt - By Dea Heller

2010-06-30T18:41:00.011-05:00

When I handed over all I had left of Grey to a complete stranger five months ago, never could I have imagined what I would receive in return. Again, Dea and her abilities - truly one of Grey's gifts. It's hard to put into words what I felt when Dea first showed my mom and I his quilt. Immediately, my mom and I looked at each other wondering how someone who never met Grey created something that is so "him". I could never put into words what these pictures can show you. For all of you who knew Grey, I'm sure you'll agree - all these colors mix together, to Grey.

Dea - a thousand thank-yous. How you captured Grey's spirit and pieced it together, I'll never know. I'm just glad he led me to you.

Untreated PKU

2010-06-29T23:39:00.003-05:00

Please click on the link below. This is what untreated PKU looks like. We had NO idea! At times we feel so cheated by Grey's loss due to the lack of newborn screening. But after watching this, we feel blessed that Seth is so healthy.

http://www.change.org/petitions/view/urgent_save_the_livelihoods_of_15000_americans_diagnosed_with_pku_who_will_lose_their_treatment?widget_fb=1

Because, thankfully for us, this is what healthy PKU looks like.

Hunter's Hope 2009 Family & Medical Symposium Video

2010-06-18T14:46:00.002-05:00

The above video was taped at last year's Hunter's Hope Family & Medical Symposium. We, along with other Krabbe families, were fortunate enough to be featured in it. Please take seven minutes to watch it, to see what a big role Hunter's Hope plays in the lives of so many Krabbe families.

It is still not too late to sponsor Grey's Gifts for this year's Every Step Family Walk at the Symposium. Click here to take "Every Step" with us.

Every Step Family Walk 2010

2010-06-15T20:37:00.005-05:00

This July, Bill & I will again be fortunate enough to travel to Java, New York to attend the Hunter's Hope Family and Medical Symposium. The Symposium concludes with an Every Step Family Walk.

This is a perfect way for Bill and I to give back to Hunter's Hope. Last year, Bill and I alone raised almost $500. But this year, through Hunter's Hope, we have our own page for fundraising (allowing donations to be taken online) and are allowed to have a "virtual"team to help us raise funds.

So let me try to explain how this whole thing can work. I have created a team, Grey's Gifts. Friends and family can simply go to Grey's Page and sponsor a team member, or join as a "virtual walker" on our team. Once a "virtual walker", they can create their own page and seek sponsors of their own.

There is the potential for us to raise a lot of money for Hunter's Hope. I know that Texans are a proud group of people. I also know that many of you are very possessive of our Little Man (which makes my heart swell). Most of all I realize, that after all that we have been through, it is hard for you to let your money go to New York, when we as a state still have so much to do to fix our broken newborn screening program. And I promise, Bill and I are doing everything we can to do that. We will always put Texas first, if not with funds, surly with our hearts. Bill has secured a six year term on the Newborn Screening Advisory Committee. From here on out, that is the only committee that can make decisions for our program. I promise, Bill will not let you down. He and I are also busy trying to educate the community, speaking at local hospitals, organizations, and camps. But on a larger scale, we need Hunter's Hope.

Hunter's Hope keeps us in contact with leading doctors, geneticists, screening companies (such as Perkin Elmer), and members of the ACMG (the leading decision-making body of newborn screening), all important to improving our newborn screening program here at home. They keep us connected to other affected families, in turn helping us to heal. Hunter's Hope also continuously strives to educate others of the importance of Universal Newborn Screening. They help families with children affected by Krabbe and other Leukodystrophies, both emotionally and monetarily, providing them a place to stay should their baby be eligible for a cord blood transplant and/or expensive medical equiptment. Most importantly, they fund research, through their own center, to help find a cure for the horrible disease that took our son.

I'd like to thank those of you that have already given so freely to our team. We are half way to our goal of raising $1000. If you have yet to make a decision, I would urge you to take a look at the bigger picture. Grey was born in Texas. But another baby, just like Grey, will soon be born in another state, a state too far away to hear me shout, no matter how hard I try. Hunter's Hope has that ability to reach them. Please help my family to support them, in memory of Grey.

HaPpY bIrThDaY Seth!

2010-06-14T22:49:00.004-05:00

Eleven years ago today, Seth came into this world.

Eleven days later, he was diagnosed with PKU.

At the time, his diagnosis turned our world upside down. I remember crying, because I felt it would make him different. I worried about his not being able to eat like the other football players on game night. I worried about some little girl snickering at him on their first date as he ordered a salad. I worried that he would always test the waters with food, putting his little brain in danger.

But Seth was a trooper from the very beginning. From weekly blood draws to formula that tasted like iron, he took it all in stride, learning to count his amounts of protein by the time he was 3. Not once did he ever cheat. Not once did he ever complain. Of all my children, if one had to have PKU, God knew what he was doing by picking Seth. By no means was he a whiner, much wiser than his age in realizing how lucky he was to be healthy.

"But why is my disorder so much more important than my brother's?" Again, wisdom beyond his years. I can honestly say, had it not been for Seth, and his huge, sensitive heart, I don't know that we would have fought for Grey like we did. Without Seth, we may not have even know enough to fight. All in God's big plan, I guess.

Happy Birthday Seth. Words could never express how lucky I am to be your mom. You have blessed me in ways no other child could have.

Below is one of Seth's favorite pictures, him with Jim Kelly at the Hunter's Hope Candlelight Ball. He was a guest of honor and caught a pass from the Hall Of Fame quarterback. Not too many kids can say that!

Let's Catch Up

2010-06-13T17:20:00.005-05:00

I figured it's been awhile since I've blogged, so let's catch up.

Spring brought us Little League baseball. It's always a busy season, especially since Bill and I decided to coach Riley's team. It proved to be a good experience for both Bill and I. Bill knew very little about baseball, and "throws like a girl" according to Ry, but put his whole heart in it and was a great roll model for the kids. I took on the roll of Team Mom and taught Bill the basics. By the end of the season, we almost knew what we were doing.

Seth got on a great team with some friends of ours. He was in the Minors, and at this age it really starts to get competitive. Seth has no problem in the area of confidence. So even though he only played every other inning and hit the ball a mere three times this season, he thought he was the best player there ever was. He truly was in it for the fun. That's hard to find in a kid, and kinda hard for his very competitive mom to understand. But when Seth got on base, either by walking or a hit, he was gone! The boy can steal bases like nothing I've ever seen. Those little legs of his carry him pretty fast. He may not be an athletic player, but he's a smart player, and very coachable. His team got into the playoffs and ended up 6th out of 13 teams. I'm very proud of him. Now we start his new interest, the trumpet. He made the Panther band at my middle school. I can't believe he'll be in 6th grade. He had his first private lesson two weeks ago. He thinks he's a natural. Again, no confidence issues here. If his abilities matched his heart, he would be incredible at everything he did. I think that's what I love most about him. He has such a huge heart.

Luke made it through Church Hill Middle School without me killing him. Please understand, that due to schools changing grade levels and being added on to, we have been together for the last 4 years. That's too long for any teacher's kid to have to put up with having his mom, and his mom's friends, all keeping track of him. He ended up with two high school credits before leaving the 8th grade, Health/Speech, and a full year of Spanish. He has decided that next year he will join the Jr. Air Force ROTC at Canyon High School. I'm hoping he follows in his Grandpa John's footsteps, who retired as a full colonel. Grandpa John also provided Luke with a Texas Tomorrow Fund, which will pay for 4 full years of college here in Texas. Now if I could just get Luke to apply himself and realize the gift he's been given. He's also asking to take Driver's Ed this summer. As soon as he can keep his room clean, maybe we'll talk about it. Below is a picture of Mom and us at his 8th grade graduation.

Riley flew through 1st grade and is eagerly awaiting 2nd. He started Speech classes after Christmas and is doing incredible! I'd be surprised if he has to continue them after next year. His reading has seemed to suffer a little though, since his fluency has slowed down due to the fact that he's trying to pronounce everything correctly. Poor, little Riley James Morris. Not the easiest name to pronounce when you have a speech impediment!

I decided to start my Masters in Administration in May. I took my GRE and passed it with flying colors. I got my coursework, worked on it for two days, and quit. After I had spend two stressful days yelling at my kids to get their own breakfast, lunch, and dinners, I realized that my choice had not been such a great one, especially since I didn't even know if I wanted to use it. The past two years have been very difficult for them. The last thing they needed was a crazy mom, who had just recently stopped being a bit crazy anyways. Now I can relax, knowing I tried it and that it just wasn't for me. Next school year I can really focus on what I like doing most, being in the classroom. I have also recently taken the opportunity to volunteer with Hope Hospice. They will have 3 bereavement camps this summer. I will get to speak to other parents who have lost their children. I am really excited about it. Like a good friend told me, you don't have to be in the classroom to teach. She's right.

As a couple, Bill and I have taken on some new things. We now speak through our local hospital to expecting and new mothers about the importance of newborn screening and wellbaby check-ups. We have 6 dates set up through October. Hopefully more will follow. We continue to work with Hunter's Hope and will head up to new York this July to go to their Family Medical Symposium and participate in their Every Step Family Walk. I'll blog more about that soon.

Bill got a six year term on the Newborn Screening Advisory Committee that was established through Greyson's Law. It still amazes me, a whole committee established because of our little boy to ensure the protection of all little Texans. Bill was elected "temporary chair" of the first meeting, and although he may not yet be elected as the permanent chair, what an honor to chair the first ever Texas Newborn Screening Committee meeting. I'm so proud of him! Again, another gift. Bill also was able to testify on behalf of the state about the importance of newborn screening blood spots. At the hearing a lady approached him. Her first daughter was diagnosed too late with Cystic Fibrosis and is very affected. However, her second daughter was one of the first children that screened positive for Cystic Fibrosis since the state started screening for it in December. She hugged him and thanked him, telling him that if it wasn't for Grey, there would be no screen. Amazing, I know!

And lastly, we welcomed a new addition to our household . . . a grey tabby we named Grux. He is spoiled rotten and is never put down. Rilley has seemed to bond with him the most. We were hoping to try to fill his big brother role a bit. He loves it, and carries it, and kisses it. He even has a scratch down his cheek to prove it.

So all seems to be good at the Morris household. Although the last 18 months since Grey's loss have seemed to be a whirlwind, we've seemed to come out on top, a better, stronger family. We have our ups and downs, but when I take a step back and watch my kids play, and hear them laugh, I know Bill and I have done alright.

You Can Run, But . . .

2010-06-11T22:12:00.003-05:00

Tonight I realized that I can run, but I can't hide.

It's rare that Bill and I put ourselves into busy social settings. It's kind of been an unspoken rule since Grey's death. I'm not sure if it's because I feel uncomfortable, feeling like everyone there will feel sorry for me, or if it's because I feel our presence will somehow dampen the celebration, making others feel uncomfortable. It's hard to explain, but even though tomorrow will mark 18 months since Grey has been gone, my friends are still (out of the goodness of their hearts) very sensitive to Grey's absence.

But tonight, my good friend turned 40. Bill was excited that we had been invited to her party. "Are we going? Are we going?", like an excited little kid. I was really not up to it. But then I pictured my friend, stroking Grey's hair on one of his last days, and again her and her husband sitting on our couch on Grey's 1st Angel Day, and realized that it would be selfish of me not to celebrate with her.

For fear of getting lost and being late, we left early and arrived even earlier. Upon waiting for people to arrive we spent time with my friend's mom and her close friend, who we had first met briefly right after Grey's loss. As more people arrived my friend's mom became hostess, and her friend continued to visit with us. After some time of small chit chat, she asked us how things were going with Greyson's Law. But in her eyes, there was not the expected look of pity. Instead I found a look of pride, and it made me glow inside.

As we continued to talk, more people arrived, friends . . . friends with babies. Deep breath. Bill dove right in, playing with this baby, holding that baby. I watched as the newest baby in our school family arrived, and all of a sudden it hit me. All three babies, healthy babies, in the room had had an expanded newborn screening test because their moms had know Grey. That was a tremendously overwhelming feeling!

Tonight I realized that I will always be "that mom who lost her baby". But Grey was not just any baby. It has taken me 18 months to realize it, and accept it, but with pride in my eyes I can now be "that mom".

Before I left tonight, I held the first baby since Grey left my arms. My friend's husband walked past me, "You look good holding that little one". His words stopped me cold. He saw me for exactly who I was, a forever grieving mom accepting, and enjoying, all the gifts her son has given her.

Thank you Mitzi's Mom's Friend (I'm horrible with names) - For the pride I saw for my son in your eyes. You never even met him, but I know just by our conversation that he's changed you too.

Thank you Mizti - For turning 40 and getting me out, and for not being afraid to share Cash with Bill and I from the very beginning.

Thank you Mitzi's mom - From the first time I met you I could feel your warmth for my son.

Thanks Jana - For letting me enjoy Davis from afar until I was ready.

Thank you Erin - For letting me hold Clay, and asking if I was sure first.

Thank you Stephanie & Peter - You both made sure that I knew that Presely's NBS test came back perfectly fine. You both knew I needed that.

And thank you Clint - Those words rolled right out of your mouth, like they were just suppose to fit. You know what? I think they are and just maybe they do.

Be Still

2010-02-25T18:17:00.007-06:00

One year, two months, one week, and six days.

That's a long time to have lived my son's disease over and over again. It's taken me a while, but I've come to realize that, for now, I can no longer put myself there. I believe that Grey lived with Krabbe so that I didn't have to. To be in the place that I am now, trying to fix this disease that broke me, is breaking me more. He'd never want that for me.

I have to realize that it is not reasonable for me to believe that I can save the world from this horrible disease. I gave it a good run, accomplished things that many have not. But, for now, I have to walk away.

I have to be still.

I have to take Grey back. I need him to be the little boy he was before we realized he had Krabbe, free from the expectations that I have put on him through this journey.

My blog, my Facebook, my connections to other affected families, all constant reminders of just how broken I am. All reminders of just how broken Grey was.

I hope those of you who know me, whether affected by Krabbe or not, will know and understand the reasons for this leave. I need to figure out who I am, outside of Grey's mom. I need to find out who I am without Grey. Blogging, connecting, sharing, have all kept him near. My stories, my emotions, have kept him alive. But now, I need to let him soar.

One year, two months, one week, and six days.

Consumed. Consumed with who he has become, with who I have made him, with who I have made me.

It's time to be still, to listen, to live.

Good-bye for now my friends. Your love for Grey still amazes me. I'll carry it with me always.

Fly high and play hard Little Man. I love you.

Yesterday, Today, & Tomorrow

2010-02-22T19:09:00.004-06:00

At what point to I hold up the white flag and surrender to this enormous loss of my son?

As I sat this evening with my husband and filled out paperwork to form a non-profit organization, Grey's Gift Foundation, I questioned my commitment. I do things 100%, or not at all. And I wondered, can this broken mom continue to give to what broke her?

Some people lose a child, time passes, and they start to rebuild a future. But how can you rebuild a future when you're living so much in the past? Not a day goes by that I don't think of other families that could be affected by some rare disorder. What if I were the only vessel of education that they had, because of Grey? What if I weren't there to speak of him?

I'm so tired, tired of being caught between yesterday, today, and tomorrow. I can only give so much. Never do I want my other three boys to feel as if they aren't as important as Grey. But for the past 3 years, he has been my focus. Do I allow that to continue, or do I put him back in line with the others? And if I put him in line, will he fade away?

I haven't quite figured out the best way to try to heal. Do I continue this journey of awareness, a journey so intense that if I close my eyes, I feel him near? Or do I lay down on the floor, cry for a few days, pick myself back up and leave him in the puddle?

I know that there will never be a day that I don't think of Grey. But should there be days in which all I think about is drivers licenses, PKU, and Little League? Where is the line of doing for Grey, and doing for the other three?

At times I think I could blow it all away . . . quit blogging, close my Facebook, disconnect myself from those who have suffered the same fate. I wonder if in doing so, I might breathe a little easier, without the constant connection of Krabbe.

But what if I'm that one, that one that Grey chose to get his message across? Would that lessen his loss if his voice was no longer heard?

There's got to be a point where I take him back, just him, free from disease, free from expectations, free from exhaustion.

Will I ever be?

Piece By Piece

2010-02-19T20:54:00.005-06:00

This week has been an exciting week, as far as Grey's quilt is concerned. I have found a quilter and am extremely happy with her.

My biggest fear was that when I met someone willing to make Grey's quilt I would not be able to part with his things. However, that was not the case.

I walked into a stranger's house with a container full of Grey's clothes, blankets, and bibs. With me I also brought some pictures of Grey. She was very interested in Grey's story. As we continued to talk about Grey, she sincerely listened and seemed to pick up on his personality very quickly. She fell in love with one of his pictures, the one above, so much so that she asked if she could scan it and place it in the middle of the quilt. Never did I even dream that he could be on his quilt. How cool is that?

It was interesting to me that she picked out two outfits, the two outfits that we had had professional pictures made of Grey in, to be a focal point on the quilt. Looking at his card from his memorial, she also picked the line, "Life is short, but sweet for certain," to go on the tag she hand sews on the back, along with his name and dates.

I went in with a pattern, full of stars, and she said that she thought that would go perfectly with Grey's jungle attire. She can also quilt in stars and swirls. She asked me to meet her in town to pick out more material in a few days. When I did, she had put more thought into the design and asked if she could do one block as the Texas flag with "Greyson's Law - HB 1795" on it. She also wants to put a star in each corner, to spell out G-R-E-Y.

We went through the Quilt Haus and a couple fabrics jumped out at me, both peach and yellow in color, like Grey's room. One was stars, which will be used for the backing. The other was butterflies, which I picked out for his Godmother. She always thinks of Grey when she sees them. It's a DMB song, "Butterfly". Very Grey.

I am extremely excited to see the finished product, although I'll have to wait until June. But I promise, as soon as I have it, you guys will see it.

Again, I'd like to thank all those that participated in Misti's fundraiser, and Misti, that helped me make this happen. I'd also like to thank those of you that continue to donate. I am so lucky to have friends like you, that want to be a part of Grey's quilt. Please know that every time I wrap myself in it, I will be grateful for all it entails.

It's In Our Genes

2010-02-15T20:19:00.003-06:00

Today was a pretty good day in the Morris household.

Seth had his monthly appointment with his PKU doctor, Dr. Matalon. We are so fortunate to finally have a great PKU doctor. They are few and far between in this area. This is only the second time we have seen him, but at our first appointment he decided to find out what mutation Seth had. Why did it take us 10 years to get a mutation? Again, we finally have found a great doctor. Anyways, there is a new drug out, Kuvan, which is the enzyme Seth lacks. However, Kuvan responds to only certain PKU mutations. Today, after 10 years, we finally found out Seth's mutations. One mutation is the bad one, the one associated with Classical PKU (R408W). But the other mutation is only a variant PKU (L249F). This is why Seth is able to process more protein than most PKU kids. L249F is a great respondent to Kuvan. This means that the older Seth gets, the more protein he will be able to process. Finally, in our crazy gene pool, something has gone right. Take that screwed up Morris genes!

Riley made a donation to Hope Hospice today. He had a "100 Day" project for school. He decided that he would collect 100 coins and give them to "the lady that played a game with him when Grey was sick" (the children's bereavement counselor) and "the lady that my mom talks to" (the adult bereavement counselor). I was so proud of him when he walked into their office with his bag of change. He has learned a lot through Greyson's loss. He is growing into such a caring, sincere, little man.

I am so proud of my boys! Sometimes I get too busy to realize just how lucky I am to have them, even if there are only 3 physically here with me. When I lost Grey one of my good friends told me that Grey would always be the whisper in their ear, helping them to make the right decisions. I guess she was right.

Grey's Quilt

2010-02-12T20:41:00.005-06:00

This week Misti presented me with a check for nearly $400 to put towards Grey's quilt!

I just wanted to take a second to thank all of you that participated in her fundraiser. I can't tell you how excited I am to have a quilt made out of Grey's things. I have to be honest, I am really getting impatient to get started. I'm still looking for someone to do it. The idea of turning over all I have left of Grey terrifies me. But when the right person comes along, I'll know. If any of you out there know anyone who quilts, please let me know.

I have a great design in mind. I'd like to incorporate a few things into it; jungle animals (which most of his clothes have), Greyson's Law (the flag of Texas), and stars (already part of the flag). I want each square to have a Texas flag in it. The Texas flag has 4 parts to it. I want each of those parts to be different articles of his clothing, blankets, or bibs. Every flag will look different. I don't know that I'm explaining it well, but in my head, it looks amazing!

Misti - A thousand times you've told me not to thank you. So instead of my words, I can only show you in love. I hope I show you enough. Your passion amazes me! I have no doubt that Grey uses you to make sure that I'm OK and that I have what I need. And for being open to that, I will never be able to thank you enough.

The Tables Turn Again

2010-02-08T20:08:00.006-06:00

One of my constants has been my yearly trips with my bff to see the Dave Matthews Band. I live for them. I figure, I give to my boys 51 weeks of the year. One week I save for me. That one week I spend with my friend and the DMB. Every summer we see them somewhere, at least twice. We've been a lot of places, seen a lot of things, all in the name of our love for the DMB, and each other. But everything changes.

The summer before last we went to Oklahoma City, Houston, then Dallas. Grey was 8 months old. As we were getting ready to go, I became anxious, unsettled. In hind sight, I wonder if deep down I didn't already know that Grey was sick. That leaving him behind was reducing the few hours I would have left with him. I made it through the tour, returning home ready to see my boys (especially Grey, since it was the first time I had ever left him). The next day Bill took him to the doctor, a month early, because we were concerned with his lack of progress, regression would be a better word. That day marked the start of this crazy journey.

Tonight my friend called with wonderful news. She, again, was going to be an aunt. However, the baby will make it's appearance on September 10th, the day DMB plays Dallas. She told me that she had found the one thing that could keep her from seeing the Dave Matthews Band.

The rational part of me understood. Since the birth of her nephew she has blossomed into this amazing person that I could have never imagined her to be even just 3 years ago. How could I expect her to not to be there to meet #2?

The crazy part of me was heartbroken. The one thing I do for me, with her, gone in a flash. I don't even know how to explain it, the importance of that time with her. But things change.

And then I remember, if not for Grey, she would not be who she is today. The love that Grey taught her, the importance of family, the ability to live each day like there's no tomorrow, Grey gave her that, through her nephew. She now has Halloweens, 1st birthdays, and Christmases.

Years ago, I always wished that she would someday realize the importance of fully loving a child, almost to the point of frustration. Now she has that.

So take a deep breath Nicole. Everything changes. And there's always next summer.

Always, my friend. Always.

Raw

2010-02-06T21:47:00.003-06:00

I remember that when I first lost Grey, my eyelids would feel raw from the tears I had cried. I'd cry myself to sleep. I'd cry when I first woke up. I'd pull myself together and make it through the day at school, only to cry on the way home. I'm not sure what it is about today, but today, once again, I feel raw.

The weekends are always harder than my weeks. If I don't stay busy, I tend to lose myself in Greyson's memory. Nobody seems to understand my need for motion except me, and maybe my mom.

I've spent most of today realizing all the things I'll never get to do with Grey. I'll never sign him up for Little League. I'll never get to meet his friends. I'll never get to share Thin Mints with him. I'll never build a race track with him. I'll never yell at him for hitting his brother too hard with a Nerf sword. All these things, just a few realizations from one single day. Tomorrow I'll realize more, like he'll never watch a Super Bowl with me.

I don't know what it is about today, but every time I see his picture . . . I just feel raw.

The Week In Review

2010-01-30T13:22:00.004-06:00

This week has been a pretty busy, emotional week. Not a day, not an hour, has gone by without my mind constantly wondering back to my little man.

On last Saturday, Bill and I went to see Extraordinary Measures. I feared I would leave the movie feeling as though I had not done enough to try to save Grey. When in reality, there was nothing I could have really done, except maybe prolong the inevitable. That was never an option for us, and I'm still OK with that decision. Instead , I left the movie feeling as though there was still so much more to be done, not for Grey, but for other babies and their families. I wish they would have touched more on the importance of Newborn Screening, but maybe that's part of my journey, not theirs.

The past week I've spent really looking at my journey, openly and honestly. Some days, I want nothing to do with it, and the idea of helping others is just not enough to have to relive Grey's loss. This week, as I leaned towards walking down that path, a few occurrences told me that I was going the wrong way.

On Monday, I got a call from Hunter's Hope. They asked if Bill, Seth, & I would be willing to speak in front of the ACMG about the importance of NBS this May. Once again, Krabbe will be up for nomination to be recommended for UNBS. Hunter's Hope feels that our family's story will help convince them. How can we say no to an opportunity like that? How can we not feel honored to be able to use Grey's loss to save others? The answer came easily. We put it on our calendar. Hunter's Hope also mentioned the possibility of us having an Every Step Walk. As many of you know, Bill and I wanted to have one on Grey's 1st Angel Day, but emotionally we just weren't ready. Tuesday would hint to me that now we were.

On Tuesday, I received a brochure from a place called Morgan's Wonderland, a park for special needs kids in San Antonio. Because I am the Department Head of Special Education at my school, it found it's way to my box. The place is amazing, and although it's not open yet I called and was able to talk to the park manager. The park is to open this spring and he felt that planning a walk for September was doable. It may even be the first walk the park will have. That's really exciting to me! I hope to establish a relationship with these people, making Grey's walk and annual event. Again, I realized that when I do as I am supposed to, things just fall into place, like Greyson's Law. So, be ready friends. I will be looking to put together a committee soon to help plan the walk and will need your help. And please, I am also reaching out to any Leukodystrophy families in Texas. This walk is for your kids too. Please join us.

Tuesday also brought about sad news. After a three year battle, a friend's granddaughter lost her battle to cancer. I had never met the little girl, or her parents, but because of Grey, I felt the loss more than I would have liked to.

On Thursday I had what will probably be my last bereavement counseling session. It was a good session. My counselor is just so incredible! She always shows me how much I've healed, that I'm not stuck is Grey's loss, as I sometimes feel. She also asked if I would be willing to start up a support group for bereaved parents. That too is exciting to me. Plus, it makes me realize that I must not be as crazy as I feel. So as the spring draws closer, I think I will find myself with a bit fuller plate, but they are both things that will help both me, and others, heal.

Thursday brought about the viewing of the three-year-old. As I pulled into the parking lot, I really thought about whether or not I was ready to walk into the church. But then I saw an old friend pull in. I breathed a sigh of relief and got out of my truck. The love my friends give to me is still so incredible! As we walked into the church, there was my friend walking behind me, rubbing my back, making sure I was OK. It was just so natural, that she probably doesn't even realize that she was doing it, or how soothing it was to me. As I approached the grandma she was surprised to see me. "Nicole, thank you so much for coming. But, you are the last person who needs to be here." But I knew that it was because I was the last person who needed to be there, that I needed to be there. Maybe it's all part of my need to heal, to see that I am not the only one who must live through the loss of a child. Part of me felt a huge need to reach out to the mom, to show her that people do live through this sort of thing. Selfish, really. I just don't always want to be "that mom who lost her baby". Maybe I feel that helping others helps me shed that skin. As I drove away, I felt blessed that this time it was me able to walk away and return home to my kids, even if it was only three of them.

I have continued to hold to my New Year's resolution of getting healthy. I've really tried to put it into perspective, that my Grey would have done anything to be healthy. I have had every opportunity to be healthy and for years have chosen not to. Grey is a big motivator for me. Since January 1st I have lost 10 pounds. I work out 5 times a week and have stuck to a 1550 calorie diet. I have not had a real Coke in 29 days! That's huge for me. I used to drink at least 4-5 a day. There is this really cool iPhone app called My Fitness Pal. You put in how much you weigh and your height and how much you want to lose. It gives you the amount of calories you should consume a day. It lets you enter the foods you eat and subtracts those calories from your total. It also adds calories back when you exercise. It has been working amazingly well for me. It has shown me how poorly I had been eating and helps me to look at foods as calories, as opposed to just seeing chocolate or chips. It also makes me aware that my body only needs so many calories a day, and that I don't need to eat out of anger or stress.

Misti's fundraiser looks to have been a success. There is still a couple more days to order, but a lot of people have really come through. Thanks to everyone for contributing. Misti will have a total on February 12th. Again, I have amazing friends!

A Projection Of Light

2010-01-22T21:53:00.008-06:00

Within the last couple days I've mentioned to a few of my close friends, and my mom, my feeling of Grey's absence. Like I've said before, most days his spirit covers me like a blanket. Yet the last few days he's left me feeling a bit chilled.

But tonight he gave me another gift, a sign to let me know that he is still with me.

I was begrudgingly working out on my elliptical, having improved from 15 minutes to 30 minutes in the last two weeks I might add, when I looked up at his pictures on the wall, the ones we had at his memorial. They hang above his keepsake chest.

There, between his pictures and his chest, was a projection of light from the circular holes in my new Scentsy warmer that I just got from Misti for Grey's fundraiser. The projection was in a shape of a heart. Just when I think that his little angel world is too busy for me, he proves me wrong.

My little man, he's still AMAZING!

Grey's Gift Scentsy Fundraiser

2010-01-17T17:03:00.002-06:00

My friend Misti sells Scentsy. She has decided to have a "Grey's Gift Fundraiser" for the month of January, her commission paying for the quilt Bill & I want to get made out of Grey's clothes, bibs, and blankets.

Do you know what it's like to have a friend willing to give up her commission to pay for your baby's quilt? I can't even put it into words. But I will say that I would love for Misti's commission to go through the roof because, no matter what, she is set on paying for this quilt. But imagine if she could get the quilt and still have some of her commission left? That would be awesome! She has been there for us, and with us, since before Grey's diagnosis. Show her some love for me!

You can reach her Scentsy website here. You will see "Grey's Gift Fundraiser" listed on the left of the screen under My Open Parties... click buy from order.... and have fun shopping! She will let everyone know the on February 9th the total that was raised for Grey's Gift! Spread the word!

The Spectrum Of Grief

2010-01-13T18:44:00.009-06:00

It feels like forever since I've really blogged about anything significant. Maybe significant isn't the right word. Personal would be a better word I guess.

December felt like a whirlwind of activity; Grey's Angel Day, his birthday, Christmas Break, Christmas, Riley's birthday, and New Year. This year, as I wearily entered the doors of CHMS on January 4th, I realized that I must be healing. Last year I couldn't wait to get back to work. I had been out since December 4th when we found out Grey was terminal. It was like I needed to be back at work. Work was a full 8 hours of constant support. It was also a full 8 hours where I could hope to stay busy enough to move Grey out of the forefront of my every thought.

It's really kind of hard to explain, the jump I decided to make since the anniversary of Grey's death. I think I just figured that if I could make it through the first year, I could make it through another. And I talk a really good game when it comes to Grey. I think that I work so hard at convincing other people not to grieve him, it rubs off on me. But I'm still afraid to just stop, stop and think about the magnitude of his loss.

I think right now the thing that bothers me the most is the absence of his room, although it's really just an obvious symbol for what is really gone. The house, to me, has taken on a completely different feel. "Riley's room," I tell myself. But it will never really be Riley's room again. To me, it will always be Grey's room, the paint masking it's yellow walls just as my smile masks my heartache. It's still there, you just can't see it. I wonder if Ry feels the same way. I've slept more in there than he has. If I close my eyes, I'm back in the jungle, Grey sleeping soundly in his crib.

The spectrum of grief is so crazy. Within minutes I can go from feeling like Grey's spirit covers me like a blanket, to feeling like he was just a dream. It's hard to accept that I am moving on with my life without him being a physical part of it, although I know that that is the goal. Yet at times, I see his picture, a picture that I've seen a million times, and my chest tightens as I struggle to take the next breath.

On a lighter note, tomorrow is payday for a lot of us. Think about checking out Misti's Sentsy site. I'd love for her to have a record month because of Grey. She's given so much of herself to us. I'd love to be able to give her something back.

Grey On Inspirational Quilt

2010-01-10T19:42:00.003-06:00

Vote for Greyson's Law in the Extraordinary Measures Inspirational Quilt Sweepstakes. Help me tell the world about Grey!

Click here, then look for Greyson's Law on the Inspirational Quilt. You can vote once every day.

Greyson's Law In Action

2010-01-06T17:02:00.010-06:00

The Texas Department of State Health Sevices has made it official. Greyson's Law (HB 1795) has made it to their website, announcing the formation of the Texas Newborn Screening Advisory Committee. Click here to read more.

In addition to this great news, I have more.

Do you know what it's like to have a friend willing to give up her commision to pay for your baby's quilt? I can't even put it into words. But I will say that I would love for Misti's commission to go through the roof because, no matter what, she is set on paying for this quilt. But imagine if she could get the quilt and still have some of her commission left? That would be awesome! She has been there with us, and for us, since before Grey's diagnosis. Show her some love for me!

Click here to go to Grey's Gift Fundraiser. Then click on our picture in the right-hand corner of Misti's blog.

Below is one of my favorite pictures of Misti, in the midst of her ugly cry. She loves us that much!

Resolutions

2010-01-01T15:02:00.003-06:00

Below are my resolutions from last year. I lived and breathed them. I read them nearly every morning, keeping a copy hidden in my desk at school. I am proud to say, that as I read over them a year later, I feel that I did a pretty good job honoring them. But I think it's still important for me to keep them on this year's list. Last year's resolutions were promises to Grey. This year's resolutions are promises to myself. You will find them further down in green.

Grey,
I promise to never darken your spirit with my sorrow.
I promise to make you as proud of me as I am of you.
I promise to focus on the time I had with you, not the time I'll have without you.
I promise to share your story with everyone I know.
I promise to not turn our house into your shrine.
I promise to do things for me, as though you were here and healthy.
I promise to treat your brothers as I treated you.
I promise to allow your loss to make our family stronger instead of breaking us down.
I promise to live each day as though there is no tomorrow.
I promise to remember what is really important.
I promise to see you every time I look into your daddy's eyes and not be sad.
Love,

Forever Your Mom

I promise to take better care of myself, starting with my physical health, realizing that Grey never had the choice to be healthy. I do.

I promise to keep things in perspective, that perspective being from a grieving mother, realizing that nothing is as bad as it could be.

I promise to be patient with others who may have a different perspective, those untouched by such an event that shakes your whole world.

I promise to open myself up to love, and be loved, more than I have allowed the last year, in fear of crumbling by it's touch.

I promise to slow down and see the beauty in a quiet moment, like Grey did when he laughed at the breeze blowing through his hair.

I promise to be a better mom, wife, friend, in hopes of letting Grey's spirit shine through me in everything I do, carrying his smile in my eyes.

I promise to support other affected families, living by example.

I promise, through Greyson's law, to continue to protect newborns and their families, from treatable disorders.

I promise to continue to share Grey with everyone, even though I long to take him back as my own, in hopes of continuing to educate others about universal newborn screening.

Dearest Friends & Family,

Happy New Year to all of you. Thank you for the love and support that you have given my family throughout the last year. If I could wish you one thing, I would wish you hope. Hope can open up not only your heart, but your world.

All My Love,

Nicole

Perfect!

2009-12-27T19:25:00.006-06:00

I think for a few months we all knew it was coming, we just didn't want to talk about it. As the holidays (and time off from school) approached we, as a family, started to talk about taking apart Grey's room. On Thursday it was decided that Ry would move back into his old room, since he had gotten booted when we found out we were expecting Grey. But he had a couple conditions; we had to paint over Grey's jungle print with two walls being green and two walls being tan, and we had to make it a GI Joe room. So . . . not only was it going to be hard enough to dismantle Grey's room, now I had to paint it, something I swore that after painting it the first time I would never do again.

On Friday Bill and I found ourselves at Target buying GI Joe bedding, then at Sherwin Williams picking out paint, a gallon of green and a gallon of tan. As we bought all the needed supplies we found ourselves getting excited for Riley. But as we walked into Grey's room and started unscrewing his crib, we found ourselves in tears.

First of all, what we were going to do with everything? I had called a co-worker earlier in the week to offer her a few of Grey's things but couldn't follow through with it. Now Bill and I had a room full of dismantled stuff; crib and bedding, changing table and diapers, toy chest full of his toys, and his swing. The closet had even more stuff; highchair, stroller, car seat, play gym. His dresser was still full of his clothes. It seemed like we were only moving things from his room out into the living room. Now Grey was everywhere! Overwhelmed I called my mom to help us.

As she stumbled through our living room into Grey's room, she found both Bill and I crying as we attempted to take his toys out of his toy chest and put them into a big black trash bag. No matter how hard we tried, we just couldn't bring ourselves to do it. Then my mom came up with this great idea.

She suggested that we bag up his toys, but use his toy chest as a keepsake chest and put it in our room. In it we would keep only the things we really needed. Brilliant! For some reason, both Bill and I could handle that. In the mess we had created, suddenly Grey's things became a clutter that we could get rid of, needing to keep only the things that we held dear to us. We also kept all his clothes, bibs, and blankets that meant something to us. We decided to have them made into a quilt.

After we loaded up my truck with Grey's "stuff", we decided as a family what we would do with it. The decision was easy, as all six of us knew at once that it should all be donated to Hope Hospice in New Braunfels, in an attempt to try to repay them for all they have given us these last 13 months. Bill will drop them off tomorrow after he get off his night shift. Selfishly, I'm glad it's him doing it instead of me.

After the truck was loaded, Bill and I started taping, then painting his room. Bill was awesome! Even though he had to be at work the next morning at 7 am, he was up past midnight helping me get a good start on Ry's room. We got the 2 green walls painted before we called it a night.

This morning I woke up early and touched up the greenwalls, then started on the tan. I was so anal about it all, knowing that Grey would want Ry to have the perfect room. As of this evening, he does.

As Riley and I finished making his bed, he ran into his old room. He came back with his picture of Grey and Grey's favorite bath toy (a cheetah devil duck that Ry had given him) that he had found yesterday going through his things.

"There. Now it's perfect!" Ry shouted as he jumped up and down on his new bed, happier than I have seen him in a long time.

Perfect.

Merry Christmas Grey

2009-12-25T09:26:00.004-06:00

As the wrapping paper was being ripped to shreds I realized, that for the most part, my boys have moved on. No more are they consumed by their brother's death. In the moment, they aren't concerned with what toys he may have liked at this age, or whether or not he would have remained awake in the wonderment of Santa.

But as Riley plays with his remote controlled 3 foot dinosaur, I wonder how Grey would have reacted to it. Would he have been scared or would he have faced it head on with his toy sword? I find myself turning towards the personalities of my nephews, or a friend's son, now my only comparisons for toddler reactions. Hmmmmm? But they are not Grey. And his personality patiently awaits for me until I see him again, someday.

Constantly pulled, between the loved ones of this world, and my longing to see my baby. I went for a walk late last night and pondered the thoughts of his Christmas in Heaven. I asked him, out loud, how his Christmas was so far. With perfect timing our neighbor shot off a beautiful firework. As a grieving mom, I took it as a sign from Grey. And as I realize that I could never give him that kind of Christmas here on earth, I find myself questioning if his Christmas was good enough. The toys. What about the toys? Surely God doesn't make Christmas in Heaven all about Jesus. That would be just selfish! My baby had better have gotten toys, and lots of them! I could have made sure he had gotten them. I would have delighted in his wild eyes as he marveled at our tree.

But then again, had I not experienced Grey's loss, I may have taken those eyes for granted. Perspective, I tell myself. Keep everything in perspective and the grip on my heart will loosen.

Last year, I muddled through. But this year, I must press forward. I must move through those things that keep me floating in his memory.

I think it starts with taking apart his room. It needs to, once again, become Riley's room not Grey's. One of my Christmas presents was a gift certificate to Sherman Williams for paint. I need to paint the walls. They can't stay bright yellow with giraffe spots. Like the book, Lovely Bones, when they find their dead daughter's bracelet years later. The mother looks at it, and instead of rejoicing in the finding, she realizes that her daughter's bracelet is that of the little girl she once knew, not who her daughter would be now. I get that. Grey probably wouldn't even want that baby room anymore. And for Christmas, I probably would have given him a different room, one with the new things he liked, whatever those might have been.

But keeping his room has kept Grey my baby. It's the only Grey I have ever known. It's the place I go when I need to smell him, feel him close. But I've realized, Grey's memory does not reside in his room.

Grey's memory resides in my heart. Only there can he grow.

Dearest Grey,
Merry Christmas Little Man. I miss you more than I can put into words. I love you even more than that. I pray that your Christmas was everything that you wanted it to be, that you didn't feel like you had to miss out, to be here with me making sure I was OK. I'm OK baby. Go and play. Go and play.
Love,
Forever Your Mom

My Blanket

2009-12-20T20:17:00.003-06:00

I'm hoping today marks the last of "a year ago today", with Grey's memorial. I drove past the funeral home today on the way to the grocery store to get makings for fudge. And like every other time that I drive by it, it didn't really make me sad. I still see all of you standing in the parking lot, dressed in your Sunday best, balloon in hand. It usually makes me smile, all there for the love of my baby. Today was no different.

But last night was rough. It's not often that I let myself actually feel Grey's loss. Most days I am too busy convincing myself that Grey's loss does have purpose. Most days it doesn't take much convincing. But yesterday, as Bill and I went Christmas shopping, there was no convincing me. It must have been the shopping for the stockings, everything in threes, instead of fours. It made me so sad. The innocent comment from teller, "Three at home?"

How do you say yes without feeling guilty? How do you say no without an explanation?

This last year and a half has just been a whirlwind. Sometimes, I'll look up and see his picture and I can't believe that he is really gone, that I'll never, ever hold him again. That I'll never know what, as a two year old, he would like to play with. That I'll never again hear his laugh.

As I write this and feel the pain in my chest, I can feel why it's easier to focus on what I had with Grey, what he gave to the world, instead of focusing on the loss. And I am lucky, that most days, I wear him like a blanket. Most days I feel his soft spirit warming my skin. I can hear him whispering in my ear, giving me strength to smile and laugh. I want to smile and laugh.

On Friday, at school, our band and choir had a Christmas concert. At first, my heart hurt as I felt lonely in a gym full of people. Then I realized that last year at this time, their was very little room for celebration at my school. The memory of it breaks my heart. But as I looked around, I saw Grey's spirit everywhere. I saw it in Chelsy and Richard as they danced in unison to Frosty The Snowman. I heard it in the kid's voices as they sang along. I saw it in Dani's smile. And I realized that in just a year, because of an amazing little boy, we have all grown and healed a lot.

His loss could be so much worse.

Grey's Gingerbread House

2009-12-20T18:43:00.004-06:00

Last year when we lost Grey, we decided that every year on his birthday, we would make him a gingerbread house. Here is this year's. It's not a masterpiece, but it was done with love. We miss you Baby!

Happy 2nd Birthday Baby

2009-12-18T00:01:00.004-06:00

This is called "A Christmas Song", by Dave Matthews (of course). I don't know why, but since I lost Grey this song has always remided me of him. Maybe because sometimes I view him, too, as a sacrificial lamb.

Father up above
Why in all this anger
Do you fill me up with love
Fill me up with love, love

Dearest Grey,
Happy 2nd Birthday Little Man. I am so proud to call myself your mom. What you've given me I could never have gotten from any other. Fly high & play hard.
Love - Forever your mom

Before you start the video remember to scroll all the way down first to pause the blog playlist music.

In The Days Since . . .

2009-12-17T17:33:00.003-06:00

"How have you been since the 12th? How are you feeling?"

It not like I haven't asked this question to myself a thousand times since Saturday, but when the words rolled out of my mouth it was like I heard them for the first time.

Now I don't know what all you out there believe, and I'm hoping that those who follow my blog don't judge the senses of a grieving mom, but I believe that from the time my little man left his body, his spirit grew within me ten fold. I feel him. I smell him. I hear him. I see him in extraordinary ways.

But since the 12th, I feel his absence. And I'm almost wondering if God gave him a timeline, like a set amount of time that he was allowed to just focus on me and make sure that I was OK. Like he knew that if I was OK, I could emotionally keep our family afloat. But now his year is up and he has to move on.

Not move on completely, but focus on others. Ry has been talking about him in his sleep. Bill has seen many more things that he has felt Grey has put his hand in. And in a way, I pray that Grey can give Bill and the boys the strength that he has given me this past year. But a huge part of me mourns the thought of losing that connection.

I laid in bed just last night and talked to Grey, pleading with him to show me a sign, to let me feel him again. And sure enough, this morning my cardinal flew in front of my truck. A bright red blur in the grey morning sky.

Bill thinks he's just taking a break, that the heart in the balloons was a huge sign for us, that Grey expended all his energy for one big sign. What an awesome sign it was! But I don't think so. I think he now has to spread himself a little thinner, give his heart to more people than just me. And I understand that.

"How have you been since the 12th? How are you feeling?"

I miss him. I really miss him.

Grey's 1st Angel Day

2009-12-16T17:03:00.008-06:00

The anticipation of December 12th was much worse than the actual day itself. And if I had truly stopped to think about it, I would have realized that, not unlike any other day, my friends and family would be there to get me through.

Many of you have since apologized for not being able to either be there at all, or be there for our 2:00 balloon release. My response to that would be to show you the picture below, snapped at 2:08, exactly a year to the minute that our little man left his broken body. Please take comfort in knowing that you were exactly where you were supposed to be at that very second. For if you had been with us, the picture may had turned out very differently (I see it as a heart with wings).

The crucial times I was worried about getting through, 2:08 and 4:30 (when Grey's little body was driven away) were full of waves of people. It was perfect! At 4:30, we were too busy playing the Wii to even notice what time it was.

Families brought us ornaments, a great idea inspired by Misti. She asked that people bring ornaments that reminded them of Grey. It was incredible to see how others viewed our little man. We got angels, cardinals, a dove (all the way from Hunter's Hope in NY), a Texas flag, jungle animals, and ornaments encompassing our whole family. It was incredible!

People wrote messages to Grey on balloons and sent them up to him. What I wouldn't have given to see what they all had written! A few that weren't here wrote poems and mailed them to us. We also bought a blue star balloon on which we put his name on with stickers. Ry let that one go.

A few people asked if they could go into Grey's room. I get that, and thank you for asking. Some just felt the need to feel closer to him. And when I would come to check on you, and hear you talking to him . . . my heart just swelled, as did my eyes.

I imagine that this will be an annual thing, maybe some years bigger than the others depending on the day of the week that the 12th falls. I could go on and on about all the parts that made up this perfect day, but instead I'll just post pictures.

Thank you, all of you, for getting us through this first year. I know Grey lives in all of you. I love you.

Days 11 & 12

2009-12-13T10:02:00.005-06:00

I know I've fallen a couple days behind, but in the rush to get home and start getting ready for Grey's First Angel Day, I left day #11 at school. However, you should be proud that I didn't open it and didn't even know what it was until Melinda told me. It will be there waiting for me to open when I arrive tomorrow, the last Monday morning before Christmas Break. Magical Memory #11 was a lion.

Last Spring Bill and I took Grey for pictures. We actually bought an outfit for him to wear right there at JC Penney before his session. We brought some jungle animals from his room to have in the pictures with him. But while looking for the outfit, I saw this cute little lion. He ended up making it in the picture too.

Looking back at this picture, I wonder why we didn't question the fact that, at 4 months old, Grey was still not holding up his head.

For Magical Memory #12, both Melinda and Chelsy gave me memories. Melinda gave me a small cardinal ornament, small enough to place on my desk with it drawing too much attention. It's perfect.

Chelsy, again, wrote the most incredible note and brought us beautiful flowers. From her we received in words that miracle #12 was Bill & I. It was nice to be reminded, that as often as the two of us feel like a "broken" couple, it could have only been us who could have brought Grey into this world. #12 reminds us, that if Bill and I weren't exactly who we were, the world would be a different place. And even though it's been a year full of struggles, it has also been a year full of triumphs. Thank you Chelsy. We love you too.

I have tons of pictures that Misti took that I will get tomorrow, so I think I'll save blogging about Grey's Angel Day until then. However, I would like to share one picture with you that she knew I wanted right away. At 2:08 PM, the exact moment that we lost Grey, about 30 of us released balloons. Misti snapped a picture. This is what she got.

Day Ten

2009-12-10T18:46:00.007-06:00

Magical Memory #10 was snow.

A year ago, close to midnight, Grey got to see snow. I remember bundling him up and taking him on the front porch. I remember his eyes opening as the cold rushed over his body. I remember snuggling with him by the Christmas tree, listening to the other boys enjoying the rarity.

Snow, maybe the only thing coming close to Grey's beauty. Snow from the Heavens, maybe to welcome him, to give him a glimpse of the beauty that was to soon come.

Snow. My baby saw snow.

This past week has been really hard for me. I can't even explain the emotions that I am feeling. I had no idea, that as I stormed through Grey's death, my mind was filing every action, smell, and sound of every moment to be relived a year later.

Yesterday . . . a year since most of my school family came to say goodbye. Misti's forced smile. Mitzi's soup. All of them gathered around the Lazy-Boy. Grey settled on Dani's chest. My heart still breaks as I look at their faces.

Today . . . a year since Dani, Richard, Chelsy, and Hillary said goodbye. I can see Dani's broach, Richard's nervous hand as he stroked Grey's hair, Chelsy's tears, and Hillary's face.

Tomorrow . . . a year since Ceci said goodbye. I can see her whispering in his ear.

It's been a week of goodbyes. They play over, and over, and over in my head. But I feel them deep within my soul.

Day Nine

2009-12-09T19:52:00.005-06:00

Day nine brought the Dave Matthews Band poster from the 2009 Texas tour.

This is from the first tour that Melinda went on with me and Ceci. DMB closed both shows with Grey Street. Both nights we all sobbed through it. We couldn't help but think that Grey had his hand in the setlists.

Along with the poster came a great letter. Melinda had taken the time to find DMB lyrics that reminded her of Grey. It was incredible! And the funny thing about it is, that even though nearly every DMB song reminds me of Grey, Melinda found some lyrics that I would have never thought of.

Melinda, like the "mean one", was also new to our school, coming to work in my SpEd department. Nothing like walking into a new job and finding out your department head's son is terminal. It would have been easy for her, too, to be a mere observer to my pain. But instead, she shared it with me. Melinda was with me the day we got the call of Grey's diagnosis. The picture below was taken the same day. I've shared more than one of the worst days of my life with her. Great for me. Not so great for her.

Day Eight

2009-12-08T18:01:00.005-06:00

Magical Memory #8 is Chick-fil-A.

On October 30th, when we had to admit Grey to the hospital for failure to thrive, "the mean one" called and asked if she could bring us dinner. She brought us Chick-fil-A, Bill's favorite.

On December 10th she would bring us lunch, Chick-fil-A. She didn't even have to ask us what we wanted. She even remembered Chick-fil-A sauce for Bill's strips.

And on December 10th, she would take Grey from me, kiss him on the head, and say good-bye for the last time.

This "mean one" was a stranger to our family last August, new to our school and her job. She had a connection with Grey that few knew about, and still does. When Grey got sick, she jumped into our lives when it would have been much easier to walk away.

But she didn't. She loved us enough to bring us Chick-fil-A.

Day Seven

2009-12-07T17:04:00.003-06:00

Some things that remind me of Grey he never even touched. Some of these things I truly believe he placed here on Earth just for me, to let me know he's around me. One of those things was my Magical Memory #7, a pink and red lion from the Hallmark store.

As Valentine's Day was approaching a friend and myself went into a Hallmark store. There staring at us was a pink lion, with a red heart for a mane. Of course, every jungle animal reminded me of Grey, but there was something special about this lion that caught our attention. When we picked it up, it laughed . . . an infectious laugh. And when you pet it's back, it laughed harder. It was like Grey was trying to tell me he was OK, that he is laughing in Heaven.

My friend bought one and I bought one for my mom and one for me. Mine sits on his toy chest in his room. And I swear, every once in a while, out of the blue, I hear it laugh.

He's just letting me know.

Day SIx

2009-12-06T10:16:00.003-06:00

Day Six brought the other kind of oatmeal, the kind most people think of when you say the word.

The smell of maple & brown sugar oatmeal brings about tons of emotions in me. Last June I was at an in-service for school. It was early in the morning when a dear friend sat down next to me. In a cup was her breakfast. Immediately I smelled it. I must have had some sort of look on my face, because she asked me if I was OK. I just told her that I loved the smell of her oatmeal. It reminded me of Grey. Like I've always said, he gives me signs in the craziest places, just to let me know he's still with me.

I'll never forget the day that Bill tried to feed him grits. He was having none of that, even though they too were maple and brown sugar! Grey always knew what he wanted. And most mornings, it was oatmeal, maple & brown sugar with cinnamon applesauce.

Day Five

2009-12-05T17:57:00.003-06:00

Day five brought "Oatmeal", Grey's favorite monkey. Notice, I still haven't opened day six!

After we had admitted Grey to the hospital, I went down to the gift shop to see if I could find something for him. There sat the monkey. We had called Grey "Monkey" from the time I found out I was pregnant with him. It was perfect!

When Grey saw him, he grinned from ear to ear. He absolutely fell in love with Oatmeal and would have conversations and laugh at him as though he were real. The next morning the nurse came in to ask us what Grey might want to eat for breakfast. Oatmeal, hence the name.

The day Grey died an amazing man, Jay, came from Doeppenschmidt to pick up his body. As he laid Grey down on top of a white sheet on our couch, I began to cry. He looked at me, genuinely broken-hearted too, and asked if Grey had a special stuffed animal I would want him to take with him. Oatmeal. Jay took Oatmeal from me, placed him in Grey's arms, and snuggled them both in his favorite blanket.

Nearly a week later, Grey was to be cremated, along with Oatmeal. Jay had gotten into work a little late. He noticed that Grey was gone, however Oatmeal was still there. He called me and told me that he was supposed to take Grey, but someone (trying to make his day a little less hectic) took Grey for him. He wanted me to know that he had called the crematorium and told them not to proceed until he got there with his monkey. He went on his lunch hour.

And Oatmeal was cremated with Grey.

Day Four

2009-12-04T18:30:00.003-06:00

Day four brought syrup. It also brought gifts for Saturday and Sunday. Do you know how hard it's going to be for me not to open those early?

The smell of syrup always reminds me of Grey.

Grey would sit forever in his highchair if anything with syrup on it was in front of him. He would pick up a piece of waffle, pancake, French toast, and put it in his mouth. The would suck all the syrup off of it, then spit it out. It became a game between he and Bill. Bill would warn him, "You better not spit that out!" Grey would look at him with those huge, mischievous eyes and the grin that matched, and spit away.

The picture below was taken during one of their interactions.

Today also marks that day that we have spent more time without Grey than with him. He's been gone 11 months, 3 weeks, and 2 days. My heart aches for him. My mind races to find anything else to think about. And . . . December 4th last year was the day we called on Hope Hospice. December 4th was the day we signed Grey's DNR. It's been a rough day.

But today is also the day we'll celebrate Bill's 41st birthday (a day late so more family could make it). Celebrate we will, because life is short but sweet for certain.

As I got in the truck this morning and pulled out of the driveway, my red cardinal flew in front of me. I know he's still here with me.

Day Three

2009-12-03T21:50:00.005-06:00

First and foremost, I have to wish my husband a HaPpY bIrThDaY! It's been a hard day for him, his first birthday without his baby. However, "Magical Memory" #3 has made it a bit easier for him. Below is a picture of Bill and Grey on Bill's last birthday. Happy Birthday Honey. I love you.

Today's gift - Grey's (and Bill's) favorite desert for Bill's birthday, cheesecake pumpkin pie. We have tons of pictures of Grey from last October through last December with pumpkin pie all over his face. They're so cute that I figured instead of words today, I'd give you the images.

And as before, with the gift came another incredible letter for Bill. Amazing! The letters themselves are better than any present . . . almost. ;)

Day Two

2009-12-02T19:40:00.004-06:00

Last year Ry picked out an ornament for Grey. Since his nursery was done in jungle, Riley picked out the only ornament that had a jungle animal. It was a hippopotamus. When you pushed the button it played this really annoying hippopotamus song. Little did I know how dear to me that song would become.

All of us spent hours in front of the Christmas tree, swaying Grey through his last days. He loved to hear that song. When the song would stop, in one way or another, he would let you know he wanted to hear it again.

Sunday, as we put up our Christmas tree, it was one of the first ornaments we put up. As I pushed the button, it was all I could do to not break down in front of the boys. To think that something so small could give him so much joy. To think that still, and always, it brings so many emotions into my soul.

I can see him, in other's arms. I can see him in mine. I can almost feel the weight of that little broken body, and the swaying of mine, as I stroke his hair and kiss his ear. Almost.

Today brought the 2nd edition of the hippo ornament. Apparently, Grey was not the only one who liked it. It reminds me of how a friend paid way too much on eBay for one after Christmas just for a memory of Grey. Others will see this post, and it will take them back too. Back to swaying with my Grey.

Twelve Magical Memories - Day One

2009-12-01T19:21:00.005-06:00

Twelve days . . . twelve days until the year anniversary of Grey's death. It seems like yesterday that I smelled his sweet breath.

I have said from the very beginning that I have some incredible friends. It has been those friends that have helped to get me through this whole grieving process. They see in me things that I don't even see. They know what I need, even when I don't.

Today I received the coolest gift from a couple of those friends. It is called "Twelve Magical Memories". I was instructed that I couldn't open it until I left school. It took everything I had and I was so proud that I made it to the truck before tearing into it. In the bag was a note, an incredible note, written by "the mean one", and I say that with tons of affection.

Twelve magical memories, given to me for the next twelve days, each linked to a memory of Grey that makes them smile. Unbelievable! The love for Grey, for me, put into this gift, it left me speechless, in tears, happy tears.

For the next twelve days I'll share these gifts, these memories, with you.

The first gift . . . cinnamon applesauce, his favorite, commonly found all over his face. Grey ate cinnamon applesauce with every meal. For breakfast, if his oatmeal didn't have cinnamon applesauce in it, he'd let me know by pounding his hand on his highchair. It was the last thing he ate.

Cinnamon applesauce . . . when I smell it, I can see him; the joy in his eyes, the smile on his face, mouth wide open like a little bird.

It seems like years since I smelled his sweet breath.

Thanksgiving Break

2009-11-29T19:36:00.008-06:00

As Thanksgiving approached, I looked forward to the end of "this time last year". Next to Bill's birthday, Thanksgiving was the last holiday that we spent with Grey. A big part of me looks forward to not having to compare everything to last year. But I also know that the three weeks ahead are going to be tough; Dec.3rd-Bill's birthday, Dec. 4th-our last dr's appt. & the day we called Hospice, Dec.12th-the day we lost Grey, and Dec. 18th-Grey's 2nd birthday. I'm so grateful that I have all of you pulling me through.

Wednesday, Ceci and I took Ry to the zoo. We all had a blast! I even got brave enough, only because I was dared by a 6 year old, to feed the birds. I hate birds. They just scare me, their wings and beaks and all. You just never know what they could do.

Thursday, the boys and I celebrated Thanksgiving with Bill's family and then with my dad and step-mom, as Bill had to work. It was nice to be around all my nieces and nephews. But Grey was always at the forefront of my mind. My dad took the boys out in his new Mustang. Instantly he became the coolest grandpa ever! And that's neat for him. I haven't been the best at making sure he gets to spend a lot of time with the boys. I need to do better.

Friday, I had a girls' night out with my sisters-in-law. We had a great time! We went to dinner and saw New Moon (not that great). We all are so busy in our little worlds. It's nice every once in a while to be able to make time for each other. Sometimes I forget just how much they love me and my family. We haven't been the easiest group to be around the past year.

I spent Saturday waiting to be able to go pick up my mom at the airport. Boy did I miss her! This is the first Thanksgiving we haven't spent together in many years. I was glad she got to spend time with my brother and his family though. She needed a break from us, just to be able to get away and not eat, sleep, breath Grey's loss like we do. But having her home is like wrapping yourself in your favorite cozy blanket, like the feeling you get as it rubs up against your cheek and you close your eyes and smile. I don't know how else to describe my relationship with her. She's my everything.

Sunday morning we got up and put a turkey in the oven to celebrate Thanksgiving at home with my mom. As the turkey cooked, Bill, the boys, and I headed to my sister-in-law's for my niece's 3rd birthday. We have pictures of Grey this time last year (see, there it is again) at her 2nd birthday party. They are the last pictures we took of him, taken only 2 weeks before he died. It was really hard to be back there today. Everywhere I looked I saw him. But in his own way, he once again let me know that he was OK. He's so awesome like that!

This evening Mom and Ceci celebrated Thanksgiving with us. There's no Thanksgiving like a Thanksgiving at home, even if it's a few days late. After dinner we put up the Christmas tree and hung the stockings, both of which brought me to tears. I was fine until I found Grey's hippopotamus ornament. I just wanted to touch it, because I knew he had. I know it sounds crazy, but unlike his clothes that I had washed, it was one of the few things that has remained untouched, expect by him. Riley was diligent in hanging Grey's stocking. On the hook also hangs Grey's baby blue "Grey's Gift" bracelet. In his stocking we placed Oatmeal (his monkey). Grey is still so much a part of this season, as he always will be.

Many of you have asked if we are going to do anything on the 12th, and honestly, we've gone back and forth. But today we decided that we would like to open up our house, from 1:00 - 5:00, for those of you that would like to stop by. Nothing fancy, maybe some snacks. However, we will have a small helium tank and balloons so that we can send them up to Grey. Bill, my mom, the boys, and I will be releasing our balloons shortly after 2:00, but balloons will be available throughout the day.

Please keep our family in your thoughts, prayers, energies . . . whatever you do. We'll take all we can get.

"We're On A Mission From God."

2009-11-22T20:29:00.009-06:00

It's times like this weekend that make me realize, that no matter what, Grey was put here on this Earth and given to us to show others the importance of Newborn Screening. Our time in Buffalo was amazing! Hunter's Hope treated our family like superstars. The recognition that they gave Grey, Seth, our family, and Greyson's Law left us speechless.

Imagine a room filled with hundreds of people. On every table was a postcard of Grey.

We were honored as Grey's family. The interview that Bill and I did this summer at the symposium was put to video, along with interviews of Jim & Jill and other Krabbe families. It had all of us in tears. When the producer of the video approached Bill and I to thank us for being a part of it, we were so struck by her sincerity.

From this trip, I wanted so deeply for Seth to understand what part he played in this whole journey. Now, I have no doubt that he does.

He was portrayed as the picture perfect example of newborn screening. He was star struck when Jim Kelly approached him to tell Seth how glad he was to finally get to meet him. Here was this 6'4 Hall Of Fame quarterback kneeling down to shake my son's hand. My heart just swelled! Jim was so great with him! Toward the end of the night, Jim was raising money by riffling footballs at his friends. He would call out his friends' names and throw them the ball, them having to give the foundation $100 if they dropped it. The last name he called out . . . Seth's. Seth stood up and Jim motioned for him to come up front with him. Seth ran to Jim with excitement and Jim signaled him to go long. Seth ran out and Jim threw an autographed ball to him. Thank God Seth caught it! He jumped up and down with excitement, running to Jim to receive a high five. Maybe someday Seth will realize that very few people get a chance to catch a pass from a Hall Of Fame quarterback. Bill and I could only watch with amazement. I know Grey was right there with us, making sure Seth was not a butter-fingers.

Hunter's Hope raised over $120,000 Friday night. Awesome! The Kelly's are such an incredible family. I hope someday we can do for Texas what they have done for New York. Being with them again made me realize, that no matter what Bill and I decide to do with Grey's foundation, Hunter's Hope will always be a part of it. They do amazing things. I could never put it into words.

Our two days were spent with three other Krabbe families. Dalton is a 13 year old young man transplanted with his twin's bone marrow. He's amazing, as is his family.

Kelly also lost her son David, nearly 10 years ago, to Krabbe. She works for Hunter's Hope. She made our trip seemless, organizing everything. She was incredible!

The other family, Terry and Scott (Reb), lost their baby boy Liam 8 years ago before his 1st birthday. We connected with them this summer. Spending a couple days with them this weekend confirmed a bond shared because of our losses. They, too, are amazing! We flew into Chicago with them on Saturday and had lunch. In the Chicago airport were statues of the Blues Brothers. I love the Blues Brothers! To quote Dan Aykroyd, "We're on a mission from God." Aren't we all?

Many thanks once again to our Hunter's Hope family; Jim, Jill, Jacque, Kelly, Caitlin, and Andrea. I don't know where we'd be without you.

We Hope

2009-11-18T17:58:00.007-06:00

I'm getting very excited about attending the Hunter's Hope Candlelight Ball on Friday. My friends have approved my dress, my wrap, and my shoes. I've picked out and been given the perfect jewelry to wear. Bill and Seth have been measured for tuxes. They even got their hair cut, but let's not talk about Bill's haircut because I'm not sure what possessed him to get his head SHAVED! I've spent a month picking out the perfect dress. He gets his head shaved.

I think I am most excited for Seth. It seems as though he has no idea the part he plays in our newborn screening journey. If Seth had not been the prime example of newborn screening at it's best, I'm not sure we would have even realized that Greyson was an example of newborn screening at it's worst. I'm so proud of him. He truly believes in our journey. I just don't think he realizes he's the reason for it. I hope some day he will.

Seth is mostly excited about meeting Jim Kelly. The cool thing is, Seth will tell you that before we lost Grey, he didn't even know who Jim Kelly was. He doesn't love Jim Kelly because of his Hall Of Fame status, although he is a huge football fan. He'll tell you he loves Jim Kelly because Jim Kelly cared about Grey. I can't wait for Seth to meet him and realize that Jim's biggest legacy is helping other families affected by Krabbes.

So, keep us in your prayers as Friday approaches. We hope that our Grey continues to touch people. We hope that Seth figures out where he fits in this whole puzzle. We hope that our story continues to educate others.

We hope.

Grey would have been 23 months old today. I miss him so.

Hunter's Hope 10th Annual Candlelight Ball

2009-11-15T22:20:00.006-06:00

Bill, Seth, & I have been invited to attend the Hunter's Hope Candlelight Ball in New York this Friday, November 20th.

If you would like to help support this event you can make a memorial donation by clicking here.

When donating in Grey's name, they will ask for our address so that they can notify us. Our address is:

1503 Tadmore Rd.

Canyon Lake, TX 78133

Many have already asked me to post pictures when we return. It's almost like none of you have ever seen me in a Ball gown before! :)

Grief, Too, Is A Gift

2009-11-14T20:26:00.006-06:00

November 12th came and went, and with it came some answers that I had been searching for. Knowing that I might have a hard time with eleven months approaching I scheduled an appointment with my counselor from Hospice. It had been awhile since I had been there, maybe a month and a half. I just felt the need to check in.

I guess I really started questioning myself about two weeks ago. A Christmas advertisement came on and I found myself smiling. Smiling . . . I had lost my son this time last year, yet holiday music stirred excitement in my soul. Should I really be smiling? Is that OK? How can a grieving mom smile at Christmas jingles knowing that she will have one less this Christmas season?

I don't have very many people to compare my grief to, except for my husband. We are in to very different places. I guess sooner or later, although you know better, you try to figure out who is grieving the right way. Silly, I know, but there is no manual for this, no right or wrong. Maybe that's partly why the process is so hard.

I questioned if I should be angrier. I questioned if I should appear to be more distraught. I questioned if I should be able to function at all. I don't know the answers. But I do know what I feel in my heart, and it took talking to a unbiased source to figure it out.

Grey was a gift, and continues to be. He has changed my life for the better, and will change the lives of others, with and without me knowing it. I still have a connection with Grey that would be hard for most to understand. I feel him. I smell him. I sense him everywhere. He shows me things every day, just to let me know that he still needs me.

He still needs me. He needs me to accept his gifts and use them to benefit myself and others. He needs me to be happy and to show that happiness to his brothers and his dad. He needs me to live, to breath, to laugh so that he can shine through me. And it's like he can only get to me when I'm in a good place. I don't know how to explain it. But when I'm in a dark place, he is no where to be found. Maybe his spirit is so filled with light, that he can't go there. I think that when I am lost in his loss, not even he can find me.

It's taken me nearly a year, but I think I've finally figured out what grief is to me.

Grief is:
a cardinal
his laugh
hot, caramel apple cider
DMB songs
vanilla
ink
monkeys and giraffes
dreams
my friends
Christmas lights
my mom's scar
Hunter's Hope
pumpkin pie
baby blue
re-connections
my husband's eyes
balloons
shooting stars

I'm sure my grief is much more. As painful as my grief is, it is all the things that I love. I guess my grief is, and always will be, my Grey. How can I not welcome it?

Eleven Months

2009-11-11T22:37:00.006-06:00

He's almost been gone longer than he was here.

My Grace Is Gone.

Breathing Easier

2009-11-04T19:43:00.009-06:00

I seem to be breathing a little easier tonight. Our Halloween ornaments are lit in their last hoorah before they come down for another year. The tint of the orange lights and the smell of harvest candles seem to be soothing us.

As I gladly put our first Halloween without Grey behind us, I am pleased to find that I am excited for the Christmas season to approach. As I rushed to take the Christmas ornaments down last year, only seeing Grey in them, I feel rushed this year to put them up for the exact same reason. I'm ready to sit on our couch in the hues of the blinking lights and remember our time together.

I find myself looking for singing hippos, caramel apple cider, and new ornaments to adorn our tree in his memory. We'll hang his stocking, stuffed with his Oatmeal (his favorite stuffed animal not the cereal), and make him as big a part of our Christmas as we can.

I guess I just find it surprising, although I miss him terribly, that I would be OK with enjoying Christmas because, especially in his last days, he enjoyed it so much. When we first brought him home to a Christmas filled house, he spent hours staring at the tree, laying in his bassinet or swinging in his swing. A year later, we would spend hours swaying him in front of that same tree to soothe him. Ry had picked out this goofy Hallmark ornament for him, Santa trying to stuff a hippo down the chimney. You'd push it's button and it would sing the 50's Christmas tune "I Want A Hippopotamus For Christmas". Grey LOVED that ornament! When we first got it for him in November, he would demand that the song play over and over with an excited screech. During his last few days his loud demands were replaced by a subtle stroke of his fingers on my shoulder. Even then, his spirit was amazing!

And once again, I'm reminded how lucky I am to have been his mom. To think that maybe a little bit of that spirit came from me, from the love that I gave him, is, for this moment, enough. He was a happy baby. He was a strong baby. It was like he took every breathe knowing they were numbered, yet he smiled anyways.

I can do that. I can do that, because he did.

Little Red Bird

2009-11-03T17:31:00.005-06:00

I have to remember that only I am responsible for my mood. It doesn't do me any good to let other's moods turn my bright spirit dark. The fact that I haven't figured out how to do this yet is frustrating. It was one of my goals when I started out in my bereavement counseling months ago. Now nine months into it, I feel that I'm further behind than when I started. And it's irritating, because I know better. Sometimes, it's just easier to give in. I'm so tired.

Twice this week I've found myself outside in the middle of the night, longing to feel closer to Grey. I find myself begging him to remind me how strong I can be when I need to be. I try to remind myself of all the things he's taught me; unconditional love, patience, compassion, hope. But in the coolness of Fall's midnight hours, tears run down my face and I wonder how I'll get through the night, much less this season, this lifetime.

I long to be the family we once were, before we knew what true loss was. By no means were we the perfect family, but we were not broken. Maybe it's just me that's broken.

As I walked out the door this morning, angered by it's start, I again found myself reaching out to Grey, talking in my head as to not be heard by little ears ahead of me. Then out from our shrub flew my little red bird. I thought he had long since headed south. Instead it looks as though he has made a home.

I see you. Please don't go.

Trick-Or-Treat

2009-11-02T19:04:00.006-06:00

The anticipation of our first Halloween without Grey was much worse than the actual event. As I watched the clock, I went through last Halloween hour by hour; talking with the doctor, visitors, the spinal tap, discharging him without much hope, one dear friend waiting for me in the school parking lot wearing his Ray-Bans to hide his eyes, another dear friend holding a huge lion to welcome Grey home. All these things I will never forget.

As the witching hour approached, the boys got on their costumes and we headed out to our friend's family's Halloween party. She had asked us weeks in advance, knowing what the day could bring. We had such a great time! We also had the usual Morris drama. Ry got hit in the eye with a Velcro Nerf dart. It had to have hurt! He didn't even want to go Trick-or-Treating. But Bill, being the super dad that he is, picked him up and lugged him through the neighborhood.

I did find myself watching all the little ones that passed by, wondering what Grey would have been or how he would have enjoyed the night. I found myself looking for signs from him, and as always, he followed through. Lagging a bit behind the group, I passed a dad holding his little Yoda. I saw him staring at me from a distance, probably at my pumpkin t-shirt. As they walked past me I smiled. Then little Yoda threw me a really loud kiss. It was awesome!

As much as I enjoyed the party, emotionally what happened next made my evening. My best friend has recently become an aunt. It's been wonderful watching her grow. Not having kids of her own, it was hard for her to really know the bond that a mom feels for her baby. But now that she has Thomas, she gets it. Grey has made her appreciate Thomas more, and Thomas, in turn, has made her appreciate Grey and my other boys more. Anyways . . . I get a call from her that evening. I asked her what she was doing, expecting the usual answer of the yearly Halloween party in which she has spent too much to be dressed as Jesus. Instead, she told me she was spending Halloween taking Thomas Trick-or-Treating. My heart melted. She had called me to check in, tell me she loved me, and tell me how much she was missing Grey. It was all I could do to not cry. I told her I'd see her soon and we said our good-byes.

Coming down the home stretch, we hit the last few houses on the block.

"Trick-or-Treat!," I heard the boys yell. A familiar figure with devil horns on her head stood in the doorway of her brother's house. Ry was ecstatic!

"Mom, it's Titi (his name for Ceci)!"

And it was, with her little man Thomas. I walked in the house, warmed by the familiar blanket that is my best friend, always there when I need her most. I watched the joy in her eyes as she introduced me to Thomas. I saw the love in his as he followed her every step as I held him. It was a perfect end to a perfect evening.

Ceci has always told me that she sees so much of Grey in Thomas. Later that evening, Ceci text me, "Did you see Grey in Thomas?"

"I felt him as he kicked his legs while I was holding him," I text back.

Thank you Dunlaps & Hayworths. Thank you Ceci & Thomas. Thank you Grey.

Pumpkins In Pictures

2009-10-29T21:22:00.004-05:00

Seth & his scary pumpkin.

Riley & his ninja vampire pumpkin.

The pumpkin we carved for Grey. It's an owl. Ry picked it out.
He said he thought Grey would like it. I love owls!

The boys' pumpkins.

Luke says he too old to carve a pumpkin.

However, he did grace us with his presence in this picture.

Worse For The Wear

2009-10-28T21:39:00.005-05:00

I know that my posts are becoming less frequent, but it remains important to me to be positive while posting, and at times, especially lately, I'm just not there.

Sometimes the frustration of being stuck in Grey's loss overwhelms me. Grey's memory seems to be consuming me lately. It's hard to even describe how he's so present in my mind, and the memories that come to me, come to me at the least expected times. Like today, I decided to run out for lunch. I walked outside into the school parking lot, but I was immediately transported to the parking lot at Grey's memorial. I guess it was the smell of the cool weather, along with the cloudy day. School ended and I again headed for the door, bracing myself. As I opened the door and walked out, a person behind me commented disgustedly on the humidity and warmth that had moved in. And although the air was thick, I was able to breath a little easier. I worry that cloudy, cool days will always take me back to that day.

I think of Grey every time I make pumpkin pie, every time I smell a Glade vanilla plug-in, every time I see jungle animals. I think of him at every bath time, every dinner time, every bedtime. I think of him every time someone mentions snow, as we were lucky enough to take him out in it one midnight just two days before he died. I think of him when I smell syrup and oatmeal.

I could go on and on. I just hope that after December 12th, I won't compare everything that is today with everything that was a year ago. I read a quote that an incredible sister affected by her brother's loss to Krabbe posted. It said, 'There are moments that mark your life, moments when you realize nothing will ever be the same. And it is divided into two parts, before this and after this." The fact that my life, my family's life, has been marked by such an event saddens me.

At times, I wish I could fold up the aftermath of Grey's loss and stick it in my back pocket. Maybe then I could forget about it for awhile, maybe wash it. But inevitably, I would find it in the dryer, worse for the wear.

Perspective

2009-10-22T21:54:00.005-05:00

I guess it's all perspective . . .

There are so many miserable people in this world. Maybe there are no more than usual. Maybe I just notice them more. I notice them in their nice cars, yelling at the speaker at McDonald's. I notice them, pulling their hair out as their children act like children in Target. I notice them in meetings, focusing on things that will soon pass.

Grief is a crazy thing. It has changed my perspective drastically. We all have choices to make, no matter the situation we're in. We can choose to be miserable, or we can choose to not. At times, I wonder where in the world I get the strength to not be miserable. I know I appreciate life more, love more, and my family and friends more. I know that if I were miserable, it would make everyone around me miserable too.

When I found out that Grey was terminal, I swore that I would not be "that mother who lost her baby". And if you know me, personally know me, you know that I fight that title every day. Because no matter how hard I try, I will always be that mother to somebody. Every day, I have to prove to that I am not bitter, destroyed, miserable.

Don't get me wrong, there are days that I am all those things at one time. But unless you really know me, unless you're one of those few people who really know where to look, you'd never see it.

I think of the gifts that Grey has given me often. So badly, I want to scream that they are just not enough. But I have to remember that there is always someone out there worse off than me. Somewhere, there is a mom who didn't get to say goodbye to her child before he died. Somewhere, there is a mom who doesn't know where her child is. Somewhere, there is a mom who watches her child suffer with a disease just like Grey's every day, begging God to ease his pain and take him Home. Somewhere, there is woman never even given the chance to be a mom. And somewhere, there is a mom about to lose her child and she will always wonder if she showed him enough love.

So I have to choose, every day, that I won't be miserable. I have to remember that if I had it all to do over again, I would do it exactly the same way just to spend 11 months with Grey. I'd do it all over, just so I could say that he was my son.

Grey was the best gift of all.

It's all perspective . . .

My perspective.

The Time Of The Season

2009-10-18T12:47:00.004-05:00

Do you hear that? It's almost 1 o'clock in the afternoon and it's quiet. Luke , Seth, Ry and I just helped my mom with some yard work. It's a beautiful day today, sunny and 67. So beautiful that Seth and Riley decided to stay at Nana's and "help" some more. Luke is locked in his room, again, but this time working on a project for school. I think it may just be the perfect time to take a few minutes for me and evaluate where I am in this whole messy process of Grey's loss.

I guess "messy" isn't quite the right word anymore. It's rare that I find myself a blubbering mess. More often I find myself just sad, lost in Grey's memories. My biggest challenge has been the time of the year. I can't help but think, that if I can just get myself through this first season, Halloween through Christmas, I'll no longer compare everything to last year.

As a family, we've been focusing on change, making sure that the things we do this year to celebrate the season, are completely different than the things that we did last year with Grey. I imagine that change is starting with Bill's schedule.

For the last 13 years, Bill has worked nights and weekends so that he could be home with the babies during the day. Thirteen years is a long time to not have your daddy home on the weekends. It's even longer for the mom who has had to take care of 4 boys all by herself (thankfully with the help of Nana). Never once have Bill or I ever complained about our schedules, because it was best for the kids. But now, with Grey gone, it just doesn't make much sense anymore. So, starting next weekend, Bill will no longer work Sundays. It's not the whole weekend, but it's a start. He's also going to some day shifts, being home some more nights. It'll be an adjustment, but I'm sure it's one we'll all get use to pretty quickly.

Halloween is the next event that was looming over me. I imagine October 31st is a day I will never forget, sitting in the hospital being told that my son could be terminal, and then our reaction of discharging him to make sure that he could Trick-Or-Treat just once in his life. Grey was so oblivious, dressed in his giraffe costume having the time of his life. Me, pushing him in his stroller, with my nieces and nephew running around us, trying to hide my tears. This Halloween will be different. One of my good friends, knowing what the day could bring, invited me, Bill, the boys, and Mom over to her uncle and aunt's for a Halloween party, followed by Trick-Or-Treating. Bill has already gotten off and we're really looking forward to it. I've said it before, and I'll say it again, I have the best friends. I don't know what I'd do without them.

Thanksgiving is quickly approaching. Thanksgiving was the day that we found out Grey was actually terminal. I think no matter what we do, the day itself will be hard to handle. I think our best approach is to spend it as a family, with maybe a close friend or two. After Thanksgiving dinner, I imagine we'll put up our tree, as we always do. I'm sure I'll be full of tears, but I have no doubt that together we'll make it through.

We're still looking for a way to celebrate Grey's life on December 12th, the day he died. We were going to plan a big walk, but the thoughts of it just exhausted me. Again, I'm sure we'll figure out something. I thought about a Spurs game, because I know Grey would want to see us happy, but they're out of town. Any ideas out there? I'm sure we'll release some balloons. Any of you that would like to join us are welcomed.

It's funny that our crazy red cardinal is still getting my attention. We went out to eat last night at Cracker Barrel (sorry Ceci) and their country store was full of cardinal stuff for Christmas. I bought a plate to put up on our mantle next to Grey's urn at Christmastime. It has a cardinal on it and it says "Hearts come home for Christmas". Again, I hate birds, but there is just something about that cardinal. I'm sure Grey is amused that I will probably have a house full of cardinals before the season is over.

I still have the issue of Grey's room. I've always said that I would have to move before I could take it down, because it just wouldn't feel like home without a place for Grey and his things. Riley has gone back and forth about moving into it and having his own room, but only with a bribe of it getting painted in camo. And when it really comes down to it, I don't think I'll be able to do it. I love Grey's room. And even though I know he no longer needs it, I think I do. It's the only place left that I can walk into and still smell him. Crazy, I know. But if you've lost a child you know what I'm talking about. Sometimes just knowing that there are things in there that he touched is enough.

So, I continue to take every day for all it is. This weekend hasn't been as hard as some in the past. The coolness of Fall continues to make the days beautiful. The smells of apple cider and pumpkin continue to warm my heart. The picture in my head of Grey dressed as a giraffe make me thankful that I was even lucky enough to have that picture at all.

And, I continue to trudge through this season, with the help of many, knowing that the sounds of Winter will be next.

Cool Breeze

2009-10-11T18:49:00.003-05:00

This weekend was surely marked by Fall weather. We're all surprised that it has lasted three whole days.

But with the cool breeze and the smell of burning cedar came memories of Grey, memories that I wasn't expecting.

The weather took me back to the day of his memorial. We were there, all of you, dressed in your suits and dresses, in the middle of Doepenschmidt's parking lot writing notes to Grey on blue and yellow balloons.

At times this weekend I have smiled at the thoughts of that day, all of you there for me and my family, showing us how much you loved Grey. At times this weekend I have cried, wishing, no matter how good you all looked, that I had never seen any of you in your best attire.

I've stepped out on our front porch several times this weekend, thinking that if I breath in deep enough, I'll smell him. At times I think I do. And I remember how the breeze use to take his breathe away.

Tomorrow marks ten months without Grey. So I promise, that I will continue to stand on my porch, take in everything he loved, and feel him breath life into me with his cool breeze.

Hunter's Hope Radiothon Segment

2009-10-07T18:12:00.003-05:00

Here is the segment that Bill & I did at the Hunter's Hope Radiothon. The radio station did an excellent job of putting it together. Grey Street plays in the background.

Be

2009-10-04T21:50:00.007-05:00

If you're lucky, maybe once in this life, you'll be blessed with a friend who just lets you . . . be.

I have that in Ceci.

She is the friend that reminds me that all I have to do is be. That if I will just be, I will be able to feel life for all it is. She helps me to realize that it is OK to feel the pain of Grey's loss. But in turn, it is also OK to celebrate the things I loved before I lost Grey.

Believe me, it probably would have been much easier to wait out yesterday's storm in the comfort of my own home. But in "being" with Ceci, I braved the weather and headed out to the Austin City Limits Music Festival to see the Dave Matthews Band.

Decked out in Grey's favorite Halloween shirt, my Crocs, and a $1.29 poncho, I drove an hour and a half in the pouring rain just to get there. After an excellent dinner at my favorite restaurant, we paid $20 bucks to park and trekked 15 minutes to Zilker Park.

To say we were ankle deep in mud would have been an understatement! Lone flip flops were strewn everywhere, as many had just given up on any sort of footwear. But off we trudged, all the way across the park to the Livestrong Stage.

Ceci and I parted for a mere 5 minutes, as I looked for a shirt for my brother. She had something else she wanted to check out. And as I stood, people-watching, a member of DMB walked right past me! I was in shock, so much so that I couldn't even call his name. Years I've waited to meet someone, anyone, from the band. And when the opportunity arose, I completely froze. I couldn't even get to my camera in time, since I was anal enough to pack everything in Ziploc bags so that they wouldn't get ruined.

A minute later Ceci found me.

"The guy! The guy, Ceci, with the beard! I couldn't even remember his name! He walked past me and I waved, and he smiled! The guy who took Roi's place!"

"You saw Jeff Coffin!"

"See. You should have stayed with me. You could have talked, and we'd be backstage by now!"

I guess it just wasn't meant to be. Oh, but I was so close!

Then it started to pour! We put on our ponchos, my glasses fogging, and waited for the show to start.

Was it the best DMB show I have seen yet? No. Did they play Grey Street or Baby Blue as I had hoped like the night before? No. But was it worth it?

Totally!

Because last night I remembered what it was like to just "be". To just be with my friend like we use to, before I had this loss, with the rain in my face, the mud through my toes, and the joy in my heart.

Here's to next Spring, my friend. Where will the boys take us next? I love you. What you said, about being Grey's Godmother . . . you're amazing! Nothing you ever say from here on out will ever mean more.

Wishes For My Baby Blue

2009-10-02T22:53:00.006-05:00

Tomorrow night I go see the Dave Matthews Band at ACL with Ceci, probably in the most rain we've seen in awhile. My mom just realized ACL is outside. Poor Mom. Now she won't rest until I get home.

Tonight, Ceci is in Tulsa watching DMB as I type. She just called me. They played Greys Street into Baby Blue.

See . . . Grey is even in Tulsa.

Here's hoping they play them again tomorrow night for me.

Baby Blue - DMB

Confess, your kiss still knocks me off my legs.
The first time I saw you was like a punch right through my chest.
And I will forever, ‘cause you’ll forever be,
My one true broken heart, pieces inside of me and you forever,
And you forever

My baby be.
You will rest your head, your strength once saving.
And when you wake, you will fly away,
Holding tight to the legs of all your angels.
Goodbye, my love, into your blue, blue eyes.
Your blue, blue world.
You're my baby, blue.
Confess, I'm not quite ready to be left.
Still I know I gave my level best.
You give, you give, to this I can attest,
You made me, you made me,
You and me forever, my baby.
You will rest your head, your strength once saving.
And when you wake, you will fly away,
Holding tight to the legs of all your angels.
Goodbye, my love, into your blue, blue eyes.
In your blue, blue world.
You and me forever.

My Little Left-Hander

2009-09-26T13:03:00.003-05:00

Last night, in my dream, I saw Grey. But it was different, almost like I wasn't dreaming at all.

I was laying in my bed. I sat up and saw Grey, sitting on a stool at a fold-out table. He was coloring. He would color, then look up at me and smile.

I noticed he was coloring with his left hand, which was amusing to me. I've always teased Bill that none of our kids, like him, are left-handed. Grey died before we could really determine that. So, to see him coloring with his left hand made me smile. Yet another way that he was like his dad.

I sat up and called his name. He looked at me, smiled, and waved. I woke up, sitting straight up in my bed, waving. I looked out into the living room and could swear that I saw him. So much so, that I grabbed my glasses and put them on.

He was gone. But I had a strong sense that he was doing just fine, a peace that I haven't felt in awhile.

My little left-hander.

Last Fall

2009-09-20T19:52:00.005-05:00

I guess I have been putting off this post for awhile now, but I knew inevitably, sooner or later, I would have to blog about "this time last year".

Let me start by saying that I absolutely love Fall. It is my most favorite season. I have worked very hard these last couple of weeks to make sure that it remains that way. Because everywhere I look, everything I think of, takes me right back to where we were last year.

School had just started. I had just gotten back from my DMB Texas tour. Life was good.

Within a week there was the emergency blood work, followed by the urgent trip to the neurologist. It was a month of ups and downs. On the night of Open House, I came back to school from the neurologist relieved that we were told that Grey could be fixed.

The end of September and beginning of October would be full of tests, to find out what it was we were sure we could fix. There was an MRI that came back normal, a muscle biopsy, and a nerve conduction test. On October 30th we requested another appointment with our neurologist because Grey just didn't seem right. He saw us the same day. He admitted Grey to the hospital for "failure to thrive".

This overnight stay brought us more blood work, a second MRI, and a spinal tap. Our neurologist had to go out of town and left us in the hands of a colleague, whom he had a lot of faith in. But apparently, the colleague did not know that we were still looking for a fix. He saw in Grey things that I think we, including Grey's doctor, did not want to see.

He sat us down that Friday morning, Halloween, and told us that we would have some hard decisions to make. We had to decide just how far we would be willing to go.

To go? Go where?

Oh . . . how far we would be willing to go to keep him alive. We didn't even know what he had! But we were told chances of him being terminal were about 95%.

Bill and I looked at each other, knowing the decision we had made without even saying a word. We discharged him, took him home, put him in his giraffe costume and took him Trick-Or-Treating.

That would be the first and last time Grey was in the hospital.

That was last Fall, a year ago.

It seems like forever since he smiled at me in that stupid giraffe costume. He was so cute. He was so happy.

But he was so sick.

You And Me

2009-09-16T17:57:00.006-05:00

He had your eyes.
He had my smile.

Like the song says, "Oh and when the kids are old enough we will teach them to fly."

I know it always feels like it was too soon to teach him to fly. But it was the only way for him to break free from his broken body.

And although it hurts, he, and the legacy that he holds, was one of the best things we have ever done . . . you and me together.

No Limitations

2009-09-12T16:57:00.005-05:00

Today, Grey has been gone for nine months. Sometimes when I think of him, it just seems so long ago, like he was never here. But most times, when I think of him and I close my eyes, I can still hear him, his laughter and his babbling. I can feel his energy. I know he's always close by.

And if you have read Bill's blog today, bear with me because mine is very similar. Funny how we both picked the same event to tell about on the nine month anniversary of Grey's loss. Most days, Bill and I are so connected, even when he is miles away at work.

I always felt a sense of urgency with Grey. I think he felt it too. It's like we both knew that we were racing against the clock, trying to fit everything in. Getting him his highchair was no different. I searched for the perfect highchair, and once I finally decided on one, Ceci and I drove all over San Antonio to find it. It's particular pattern had been discontinued and there were few of them left.

I think I got it for Grey when he was about 4 months old, way too little to actually be able to sit up in it. But we tried, month after month until he had finally gained enough head control at around 6 months to use it.

Dinner time was always a game for Grey. Before the highchair he was placed in his bouncy chair next to the kitchen table while we ate. He did not like being on the floor, but with 5 of us at the table there was rarely enough room to place his bouncy chair on the table.

It was continuous, his banter for our attention. And as he finally moved into his highchair, you would think that the banter would stop. But you would be wrong, because now he was king! Table conversations were nearly impossible to have, as he would babble louder and louder. And if that didn't work, he would take his right hand (having already at 8 months lost the use of his left) and bang it on the tray. Keep in mind that this was no easy feat for him. It took a lot of concentration and pure will to move a limb that barely had any neurons heading it's way.

But there he would sit, head of his table, calling all the shots. He lived his whole life that way. Despite his body, he knew no limitations.

The video below was taken just about a year ago. It's of Grey, sitting in this throne.

That's Not Grey!

2009-09-11T19:51:00.006-05:00

Last night Riley was REALLY missing Grey. He had asked to get his urn off the mantle. He sat with it on the couch while he watched cartoons. Watching him from a distance I would see him hold Grey's urn to his cheek, embracing it the best way he knew how. I went over and sat by him.

"I really miss Grey Grey," Ry said sadly. I understood.

"If we opened his urn, would we see pieces of his eyes?"

What?! Had I really done that poorly of a job explaining to Riley what cremation was? Had he thought, for the past nine months, that there were really pieces of Grey in his urn? My heart hurt.

"Can we open it?"

Deep breath.

"Give me a minute Ry, and we will."

I went into my bedroom and called my dear friend in Canada, one who sadly knew more about this subject than I.

"Grieving mother question . . ." I went on, "What did you tell the kids when they wanted to see the ashes? What did you tell them to expect?"

She told me that she told her children that their sister's body had to turn to ashes so that she was light enough to fly.

Brilliant!

So off we went, Ry and I . . . and a screwdriver.

As I unscrewed to bottom of Grey's urn my heart hurt with anticipation. I had never seen any one's ashes, much less my own son's. As I opened it up, I was surprised at the amount of cotton in it. It's such a small box anyways, 3x3x3. As I removed the cotton I saw the bag, a simple plastic bag with a twist-tie weaved through a silver tag with the number 323 engraved on it. I took it out of the urn and Grey now fit in the palm of my hand. I stared at it, waiting for the emotion to come.

"Well, that's sure not Grey!" Ry blurted out. "Whew, he really is in Heaven!"

He was right. Waiting for the hurt to hit, I suddenly realized that those ashes and those bones, though once part of Grey's body, were no longer Grey.

They were just what was left so that his spirit could fly.

Thanks C.

Venturing Out

2009-09-07T21:26:00.004-05:00

Today I planned a boys' day, at least for Seth, Riley, & Bill. Luke is 14. At times he ventures out of his room, but he could never be seen in public with us. Having to spend his days at school with his mom is enough! Anyways, I thought hard to find a place that at least three of my boys would enjoy, without spending a fortune.

So I decided on the Alamo. I know, I know. We only live 45 minutes from San Antonio, but the little ones had never been there. They were so excited last night when I told them that they couldn't sleep.

They were fascinated! How could a boy not love looking at all the guns and knives? I found it extremely funny when they realized that we, as Texans, did not win the battle. They were very upset! When we bought them toy Alamo soldiers at the gift shop they argued over who was going to be the Mexicans, not because they both wanted to be Texans, but because they both wanted to be the Mexicans so that they could win.

Another thing that stuck me funny was their fascination with the "ghosts" of the Alamo. Last night we watched a show called "Haunted History". Each week it showcases a different city and last night it happened to be San Antonio. It was hysterical to watch them peep around every corner to see if the coast was clear.

We ran into a man advertising a museum across the street, which was really cool. He was dressed like someone who was at the Alamo would have appeared. The boys were in awe of his real Bowie knife. Before we left we asked him if the boys could take a picture with him. He kindly obliged. So Bill tells the boys, "Go stand by the man in the costume." The man quickly replied, "Not a costume. Period clothing, sir." That man takes his job seriously!

But I have to tell you, that as we ventured out, Grey was on my mind. I looked for him with every baby's shriek. I saw him in every toddler's scamper. And I wondered, if Grey were here, would I too be as stressed as these other parents, trying to keep their kids quiet and contained in this holy mission?

As we were in the gift shop, making our inexpensive outing not so inexpensive, we passed Alamo Christmas tree ornaments. I turned to Bill and told him that this year we needed to keep an eye out for a star ornament for Grey. He wandered off and returned with . . . a star ornament. But not just any star ornament, the perfect star ornament. Because on the star was a cardinal.

Now those of you who have been following me know the story of the cardinal. But I will again share for those of you that don't.

I hate birds. Plain and simple. Not sure why. Just do. Awhile ago, I was having a rough day, just full of grief that I didn't know what to do with. It had just rained a bit and I decided to go outside to enjoy somewhat of a cooler evening and get the mail. As I approached the mailbox, a bird squawked. I hate birds. I looked around to make sure that it wasn't going to dive bomb me. There it sat on the telephone wire. I headed toward home and as I approached our driveway it squawked again. I looked up. Same bird. Same squawk. It was messing with me. As I turn to walk down our driveway I said out loud, "OK Grey. You know I hate birds. If you're going to use a bird to get my attention, it better be a one pretty bird." And with that, the most beautiful cardinal swooped down from behind my back, over my head, and off into the woods. Ever since then, I see cardinals everywhere.

Only Grey could use something I hate and turn it into something I search for.

It was a good day. And even though I venture out, I still see Grey in the strangest places, in the strangest forms.

Shine On

2009-09-04T22:14:00.003-05:00

Again I am reminded of the gifts that Grey continues to give, both to me and others.

A grandma walked up to me today. She looked at me and smiled. Then she stepped toward me and hugged me. She started to tell me her story. Her grandchild was born on September 1st. She wanted to let me know, that because of Greyson, her grandchild would be healthier because of the benefits of Texas' expanded newborn screening program. She wanted me to know that because it was September 1st, she was honored that her grandchild would be one of the first babies screened for the additional disorders that Greyson's Law ensures.

As my heart burst with pride, it also broke, as I had to tell her that although Greyson's Law is effective since September 1st, the state has a year to put the program into place, having to recalibrate it's equipment. I gave her Grey's website and told her that there she could find additional screening through PerkinElmer. She hugged me and thanked me again, telling me that she hoped I realized how many lives Greyson's loss will change.

And although I realize that, realistically 150 babies could go undetected here in Texas from September 1st of 2009 until September 1st of 2010. So I have to make this very clear. If you live in Texas and are expecting, or know someone that is, you will need to do your own supplemental screening if your baby is born before 9/1/10. Click here for information on PerkinElmer's supplemental screening.

But as I type, I realize that maybe it won't be 150 children. That maybe, because of Greyson, someone who would have otherwise been uneducated about Texas' Newborn Screening Program, is now educated. I also realized that three months from now, if a woman gets pregnant, her baby will receive Texas' expanded newborn screening. That's exciting to me.

I just can't believe that this has all come about because of my Grey. He truly was a gift. And to others, many of them unknowing, he will give a greater gift. The gift of life.

Shine on baby boy. Shine on.

Lasting Legacy

2009-09-01T20:02:00.003-05:00

September is Newborn Screening Awareness Month. How better to start off this month than with the implementation of Greyson's Law on 9/1/09?

Thank you Texas! You have helped ensure the detection of an additional 150 treatable disorders a year, no longer able to harm our little Texans.

Thank you Grey! Your spirit will soar through all of them. I love you Little Man. You have done more in your 11 months, without even saying a word, than most will do in their entire lifetime. I am honored to be your mom.

This is an updated version of "Who Knew". We have edited it since the passage of Greyson's Law. We are calling it, "Lasting Legacy". Feel free to pass it on.

Forever Broken

2009-08-31T21:10:00.006-05:00

Last year, out of the blue, one of my students started giving me huge attitude. Don't get me wrong, she was always full of attitude, it had just never been directed my way. I would try to check in with her, see if she was alright, and she would ignore me. I figured it was a phase, or possibly a defense mechanism. I had been her teacher since 4th grade, her only constant. She was now in the fourth month of 8th grade. It is not uncommon for kids of poverty to pull away from relationships before they know they are about to lose them, in her case, leaving for high school. The change in our relationship saddened me, but I felt that she needed to do what was best for her.

In the midst of this, I lost Grey.

I returned to school after Christmas break when the kids did, Grey being gone less than a month. Down the hall came my student. Before I knew it she was in my arms, crying.

"Mrs. Morris, I'm so sorry I was mean to you. I just didn't know what to do. I didn't know how to tell you that I'm pregnant."

Last Friday afternoon I got a note in my box. It was from that student. She had her little baby and couldn't wait to bring him up to school to show me. 4 o'clock Monday rolled around, and in the craziness of the day, I forgot to return her call. At 4:05 I was called to the office. I had a visitor. My first thought was that of an unsettled parent.

As I looked through the glass windows of the front office, I saw my former student holding her two week old son.

Deep breath. I put on a smile and walked in.

As I hugged her, she handed him to me. He was the first baby I have held since I lost Grey. He was so little, so perfect, so innocent. I spent a good 15 minutes with her, holding, feeding, burping her little boy. I passed him off, hugged her good-bye, walked down the hallway and cried.

I know how important it was for her to share her baby with me. But nothing, nothing made me feel more broken than holding that newborn baby.

The selfish side of me wonders how a 15 year old girl can have a healthy baby, while I can't. My world revolves around my boys, yet because of me, my make-up, my baby suffered from a horrible disease that cost him his life.

Dearest Grey,
I am so sorry; sorry that I couldn't fix you, sorry that you suffered because of what first lived in me, sorry that you had to hurt, sorry that you had to leave. As long as I live, I will carry with me these faulty genes as a reminder of what you could have never been. You did the absolute most with what you were given. For that, I will always be so proud and grateful. The only reason I can walk with my head up is because of what you accomplished in your short eleven months.
Love,
Forever Your Mom

All Along For The Ride

2009-08-28T22:13:00.006-05:00

As this school year approached, I looked forward to starting a new year. I was excited about how well, that I feel, I have started to heal. I was glad our journey with the legislature had come to a successful end. I was ready to teach again; something, that at the end of last year, I honestly wondered if I would still be able to do.

Looking back to last May, I can freely admit to the complete mess that I was. To those of you that put up with me, thank you for really choosing to make that journey with me. It would have been much easier for you to go down a different path. I can now walk into work with a clear head, without Grey in my every thought and action. I feel like I can once again do my job as well as I did when I was oblivious to Grey's health only a short year ago.

And although I no longer think of Grey every minute of every day, I do still see him in many of you throughout the day. I've seen him in my friend's smile as he looked at Grey's picture. I've seen him in an inquisitive student. I've seen him in a stranger as she put her hand on my tattooed wrist and cried, at that moment realizing that I was Grey's mom. I've seen him in a note from a former student wanting to share her healthy, newborn baby with me. I've seen him every morning in the same friend's eyes as she asks me how I'm doing, in her next breathe always asking about Bill. I've seen him in a heart-felt conversation with another friend who realizes how lucky she is to still have her son. I've seen him in a friendship that I've overlooked and her husband's sincerity.

The cool thing is . . . is that you guys probably don't even know that Grey is using you to let me know that he is still taking care of me. It's like he drew all of you in from the very beginning, with those eyes, that smile, and his spirit, so that you could take care of me after he had gone. How could you not love me because of him?

I am so thankful for all of you. And although I know how much we all miss Grey, I feel lucky that he took us all along for the ride.

I love you guys. I consider you all family, and it's so good to be back home.

Hunter's Hope Symposium Video

2009-08-21T22:33:00.000-05:00

Hunter's Hope Symposium

2009-08-17T16:50:00.007-05:00

Tomorrow marks a year since Grey's first doctor's appointment that sent us on this crazy journey that we now call our life. Who would have thought that a year ago I would be arriving home from a Krabbe medical symposium? Who would have thought a year ago that Texas would have new Newborn Screening laws in memory of my son? Who would have thought that a year ago I would be mingling with Jim Kelly in this exclusive club that no parent ever wants membership in?

As Bill and I loaded the plane for the Hunter's Hope Symposium I had many mixed emotions; anticipation, excitement, nervousness, anger, loss. I had no idea as to how I would make it through this week, but I was going into it with a positive attitude, as positive as I could be considering the rawness of my recent loss.

My head spun as I realized those around me were much more informed about the disease that I didn't even know existed a year ago. Enzyme levels, mutations, transplants, gene therapy - all things we knew nothing about due to the quick progression of Grey's disease. As one who takes pride in being a good teacher, I was ignorant about the one thing that would forever change my world. But I can say that I am no longer ignorant, and will continue to research this monster that has taken my baby. I will continue to educate others in his memory.

One of the most obvious things that I first realized was that Krabbe effects every child differently. Most have similarities, but they all respond differently to the disorder itself, and the treatments that come with it. Every family chooses a different path with their little one. I can say that the path we chose for Grey was truly the path he was supposed to take. Although it was hard to be there without him, as is every day, I know he was not supposed to make that journey with us. I am at peace with that.

I met several great families and had several great experiences while we were there. As a huge football fan, it was nice to see Jim Kelly as Hunter's dad instead of the Hall Of Famer that he is better known for. His family is incredible, and we have been invited to attend their annual Candlelight Ball in Buffalo this coming November. We were also asked to do both a radio and film interview about Greyson and our relationship with Hunter's Hope. It felt good to share his story and to witness once again as to how Grey still moves people.

But the ability to connect to with total strangers was what surprised me the most. There have been a few families that I have met online through this adventure. To meet them in person was like saying hello to an old friend. No one can understand what it's like to lose a child except those who have been through it. It's a bond that's indescribable.

There are so many people that I would like to thank for helping me through this first symposium, but I just wouldn't know what to say. So, I think instead I will end with a story that touch me most (I hope this mom won't mind me sharing), followed by some pictures of my new "family".

There was a family there who took Bill and I in right away. Ironically, Bill's name, first and middle, is exactly the same as their son's. I don't even know how to explain why this story touched me so, maybe it was just because it really shows the unselfish love of a mother who knows she is losing her son. We were in a group with just moms, sharing our story. She saw symptoms of Krabbe in her son at birth. From the time she found out her son was terminal she was worried as to who her son would be with when he went to Heaven. To ease her mind, and teach her son, she found pictures of her relatives that had already passed. Daily she would show them to her son, like flashcards. She would tell him that it was OK to go with those people. That is unselfish love. I wish I had thought of it.

See you next year guys. I miss you already.

The Spectrum

2009-08-10T21:58:00.003-05:00

As I sit and anticipate our trip to the Hunter's Hope Symposium on Wednesday, I am taken back by how much our lives have changed in the past 12 months.

A friend reminded me yesterday that a year ago, Grey was giving her high fives. Today, another friend gave me a beautiful statue of an angel jumping into his mother's arm. Do you see it . . . the spectrum of my recent life?

I tell you, he was my shooting star. Bright and brilliant, but gone so quickly. People wait their whole lives to see a shooting star. They stand on their back porch, waiting in anticipation, and then one day . . . Ohhhhh, Ahhhhh. And then it's gone. Do you remember what you felt like the very first time you saw a shooting star? I was lucky enough to hold one in my arms.

A year ago, we were just starting to think that Grey may have some developmental delays. We were still being told he was a lazy baby. He was too smart to have anything "really" wrong with him. Tomorrow, we leave for New York to speak at a symposium with Jim Kelly because we were fortunate enough to have changed Texas history with the passage of Greyson's Law. The day that we arrive in New York marks the eighth month of his loss. There it is again. Do you see it?

There has to be some way to pull this all together. There has to be some way to pull this spectrum, this spectrum of colors together. Because I know, when all the colors come together, they make Grey.

Oh, Grey.

It's In Their Eyes

2009-08-05T21:48:00.008-05:00

I just wanted to share a letter that we received from Senator Uresti today.

Bill is tireless in our fight to continue to spread awareness about Greyson and Krabbe Disease. Grey, as well as our other boys, are so lucky to have him for their dad.

At times I've wondered why Bill and I, more often than not feeling broken by our genetic combinations, were brought together. Then I look into his eyes, those so closely resembling Grey's, and I get it.

http://www.greysgift.com/Greys_Gift/NBS_Advisory_Committee.html

Reflecting

2009-08-03T16:44:00.006-05:00

Most of you know that I have been able to benefit from the services of Hope Hospice since Grey's death. The counseling that I have received from them has been incredible. I spent the first six months getting individual counseling. I have spent the last 6 weeks in a mothers' bereavement group, having my last meeting today. I thought that now might be a good time to reflect on what I've learned:

Grief comes in waves. As long as I allow it to flow through me, it will not knock me over.

I am grateful that I was aware of Grey's terminal condition. I am thankful that I got to say goodbye, hold him, and see his spirit leave his shell behind.

Anger gets you nowhere fast. And in my angry stages, I would never want to hinder people from grieving by not permitting them to grieve in their own way. There is no right or wrong way to grieve.

I have come out of this a different person, and so will my friends and family. I can come out of this better or worse. I feel that I have chosen to allow Grey's death to make me a better person. I have to work hard at it every day. However, there will be some, that for whatever reason, will unknowingly choose not to. It is not my place to judge them. However, it is my decision as to whether or not I will allow them to continue to be a part of my life, as it is their decision to allow me to continue in their life.

That being said, I have learned that some friends and family are your life, while others come and go with the seasons. This has probably been the hardest thing for me to accept. Some were there through Grey's illness, others for his death. Some were there right after. Some were there through this first summer. Some have been there the whole time. Being in a relationship with someone who is grieving, I know, is not easy. I realize that just because my life stopped doesn't mean others did too. Please know that I am grateful for whatever season you could give me. I cannot take the loss of these relationships personally. People give all they can give. I know that sometimes, I required too much. I hope that, as our seasons changed, you were able to take something of value with you. I did.

Grey's loss has made me a much more sensitive and aware person.

I have realized that it is OK to take care of me, and I have learned how to take better care of others.

I have learned that it is OK to continue to enjoy the things that I enjoyed when Grey was here and not feel guilty.

I have learned that every second is one that you will never get back, whether you're with a friend, your family, or a stranger. I got to say goodbye to Grey, but I might not be so lucky with others.

Those who have not lost a child could never understand the depth of my feelings. I can't expect them to. But I can be thankful when I see them try, even if the wrong words come out of their mouths.

As summer approached I was terrified of the time I would have on my hands. But I learned that my boys still needed their mom, my husband still needed his wife, my mom still needed her daughter, and my friends still needed my ear.

I am proud to say that I have made it through my first summer without Grey, even though I still mark his milestones in my head. I imagine I always will.

The Ups & Downs Of Grief

2009-08-01T19:00:00.005-05:00

This picture was taken not even two weeks before we lost Grey. What a gorgeous little boy, even in the midst of his inner struggle. Let me just preface this blog first by saying that today has not been the best day. Grief comes in waves. No matter how much I hate it, bottom line is, at times it's still a very big part of me.

I can go for days celebrating Grey's life and the 'successes' that have come from his loss. But there are days that even saving 150 little Texans a year just isn't enough. Because mine was not one of the 150 saved. The sacrificial lamb, it sometimes seems.

Then there are days that I cannot even comprehend the enormity of creating Greyson's Law, and my heart beats with pride. We have been on TV. We have been asked to speak at conferences and events. Strangers walk up to us and thank us because they are about to become a parent or grandparent. The number of lives that Grey continues to touch is incredible.

Yet part of me needs to pull him back in, to share him with those I choose to share him with, to be selfish. Part of me wishes I could wake up from this nightmare, his impatient crying on the intercom that has been packed up for seven months.

I've learned a lot about grief and mourning this summer. There are moms out there who have lost their children and didn't have a chance to say goodbye. Moms who never felt the unconditional love I received from Grey. There are moms whose children left behind very little, much less a legacy.

Grey's death seemed to be lined up with the stars. Everything about it, and those things that would come after it, seemed to just unfold as if it were all a plan. Sometimes I feel that Grey was giving us an easy way out by passing so quickly and peacefully, because there are moms who continue to fight, with their children, every day and I don't know if I could do that. And I think he knew it.

Today I went to Toy-R-Us to buy a birthday present for a very special little girl, who despite great odds, has flourished to her first birthday. While I was in the aisles looking for the perfect present, I was taken back to right before we lost Grey. How could I plan for a 1st birthday party, not knowing if he would even have one? What could I buy him that he could really maneuver his poor broken body to play with? How could I celebrate knowing the end was so near? I remember being so angry, so sad, not wanting to celebrate, secretly crying as I walked through the toys, knowing in my heart that he would be leaving me sooner than later.

This life is full of ups and downs. It's weird how such a great loss can bring you both. I'll never understand it.

Happy 1st birthday Little Miss Hannah! Through Grey's loss I have gained both friendship and admiration for your mom. I have been able to give you things that I couldn't give Grey, like a 1st birthday present, and that makes me happy. I'm excited to be able to celebrate your day tomorrow. You're a fighter, little girl, just like your mom. I'm so lucky to have you both in my life. I have no doubt that Grey watches over you. I'm sure he'll be with us tomorrow, as we celebrate you.

Why I Am

2009-07-28T15:19:00.003-05:00

"Out of my head and into the room, hello."

It's been a long 7 months, 2 weeks, and 2 days. But I think I've finally come out of the fog that accompanied Grey's loss.

Ring Around The Rosie

2009-07-25T16:27:00.002-05:00

Early Friday morning I had the best dream about Grey. It is rare that I dream about him. The first time I dreamt about him, it was dark and I couldn't see him. I just knew he was there. The only other time I dreamt about him I was holding him, with his back to my chest. I remember feeling the weight of him, but again there was not much interaction. But yesterday's dream has by far been the best dream I have had about Grey.

Let me preface this by saying that I do believe that Grey is still with me. I see signs everyday of his presence. Every night before I go to bed I talk to him and I ask him, that if he can, I would love for him to visit me. I also believe that he knows I am just now coming to a place of peace, where I am able to be with him in my dreams but still let him go when my eyes open. So, this is the gift he gave to me yesterday morning.

I was in a beautiful place, outside, and the sky was a rainbow of colors. There was a cool breeze and as I looked out into the field I could see the back of Grey. His crazy hair was blowing in the breeze. He was with a group of children his age and they were all holding hand in a circle. He turned around and looked at me, with only the smile that he had, as if to say, 'Do you see me? Do you see what I can do?' He turned back around and went around with the group, falling down, jumping back to his feet, going around again. Between each time he would turn to me and flash that smile of his again.

It was like he was trying to show me that his spirit can now do things that his body never could. He had friends, and I wondered if they weren't the children of the other Krabbes families. The giggles coming from all of them, it was intoxicating. He kept looking at me, to make sure that I was watching him, like he was insistent in getting his message across. He needed me to know that he was OK, and that he was happy.

Dearest Grey Grey,

I miss you so much. And although my heart breaks with your loss, it soars with excitement as I think of who you have now become. I know that it would have never been fair to keep your spirit trapped inside that little, broken body of yours. When we decided to bring you home and let you pass here, I was afraid that I would forever be haunted by the images of your death process. But I was wrong. In your passing, at the very end, I saw that your body was just a shell. I could feel the strength of your spirit with me, helping me to let you go.

On the outside Grey, you were such a beautiful little boy. But on the inside, well, I just don't have the words to describe you. Maybe, like the sky in my dream.

I Love You Little Man,

Forever Your Mom

The Stars At Night

2009-07-23T20:55:00.008-05:00

Tonight was a night we had been waiting for for quite awhile. Tonight, Hope Hospice revealed their yearly quilt. Every year they make a quilt using material from loved ones lost. This year, Greyson was on their quilt.

At the time that Hospice needed material, I couldn't yet bring myself to part with any of Grey's things. I went out in search of material that reminded me of Grey. I found some at the very first stop. It was green, with monkeys on it. It looked just like the pajamas that he took with him. It was perfect. And to make it better, a friend from school embroidered his name on it.

The theme of the quilt was "The stars at night are big and bright, deep in the heart of Texas". I thought it was really appropriate for Grey. We always said he was our shooting star; bright, brilliant, gone too soon. The Texas theme fit perfectly with all we did with Greyson's Law, having to work with the Texas Legislature. We were honored to have our son's star on the quilt.

But what amazed me most was the number of strangers who knew who we were because of Grey; people who worked for Hope Hospice, people who worked at the church where the event was, people in the community, all thanking us and congratulating us on Greyson's Law.

It makes me so proud, that even though he's gone, Grey continues to touch and educate people.

To all of you that introduced yourselves and told us of how you knew Grey, thank you. I can't even explain what it feels like to know that others have benefited from my baby's loss. Again, it affirms that while Grey was here, he did his job, and he did it so well. Thank you.

Thank you Hope Hospice. We are a stronger family for having you in our lives.

Life Without Grey

2009-07-20T20:47:00.003-05:00

Life without Grey is becoming more the norm than not. At times, it feels like he was just a dream. But what a great dream he was! I can still close my eyes and see him, smell him, hear him. I know he was really here. And I know that he still is. I feel him everywhere, and it's nice.

Doctors at Duke University, who lead the research on Krabbe, asked if they could view Grey's medical records. They are always looking for similarities and differences between Krabbe kids to try to make since of this horrible disease. So we asked Grey's neurologist to send them to us. Bill and I sat together as we read over everything, including his autopsy. So many symptoms we seemed to miss. So much information, that as his mom, I really didn't want to know. I can still see his doctor at our last appointment, shaking his head in disbelief, as he told us that he never thought he couldn't fix him. I think we all mistook Grey's spirit for his health. He was just so sick. But you would have never known it.

Grey's spirit is what is helping me to heal. If you could have seen it, seen his spirit leave his shell, leaving behind his poor broken body, you'd know that there is nothing left for me to do but to celebrate his life. And now, that broken body no longer contains him. He's everywhere. He guides me. Every day he shows me gifts that he's given me. Gifts that I would have taken for granted before, or just completely missed.

Just within the last month, I have really accepted Grey's loss and found peace within it. He really did change the world, and he changed my world. I will never be who I was before this. I wouldn't want to be that person anymore, although at one time I thought I would miss her. I am coming out of this a better person. To be any less would not do Grey justice.

I struggle every day to remember to be who Grey would want me to be, to make him proud. And in becoming that, I continue to heal. I have not seen many of you in a couple months. But I think you will be proud of who I've become. I think I've been able to keep the parts of me that you as my friends loved. But I am excited for you to see what Grey's loss has made me. I'm excited for you to see that I have made it out of this still intact, stronger than I ever anticipated.

Hunter's Hope 2nd Annual Family Every Step Walk

2009-07-18T15:54:00.005-05:00

As many of you know, the support of Hunter's Hope was vital in helping my family to establish Greyson's Law. Now, it's my turn to give back. Please sponsor me, in memory of Grey, as I join Jim Kelly and other Krabbes families in New York for the Hunter's Hope 2nd Annual Family Every Step Walk.

Every Child, Every Time, Everywhere.

Click here for more information.

Bill, Nicole, & Senator Uresti On SA Living

2009-07-16T12:41:00.010-05:00

Bill, Senator Uresti, and I were on SA Living this morning. Below is the direct link to the video.

http://www.woai.com/content/livingvideo/default.aspx?videoId=717231@woai.dayport.com&navCatId=13&articleID=717231

They also did a write-up. Below is the link to the news story.

http://www.woai.com/entertainment/story/Update-Greysons-Law-to-Take-Effect/_q9AjfvcfkiIjcqRRdcTTw.cspx

SA Living On 7/16/09

2009-07-14T14:37:00.006-05:00

Bill and I are honored to be appearing with Senator Uresti on San Antonio Living this coming Thursday, the 16th, at 10:00 am.

It seems like only yesterday Bill and I were there discussing the possibility of Greyson's Law. Now it's a reality, thanks to Senator Uresti, Representative Pierson, their staffs, and all of you. Not only have you helped us to make history, you've given our Grey a lasting legacy that will save countless little Texans.

Seven Months

2009-07-12T09:41:00.005-05:00

This is my favorite Grey and Riley story. Again, I try hard to celebrate Grey's life on this day, this day marking seven months since Grey broke free from his horrible disease.

Bill and Ry had five months home with Grey, before summer would come leading to the fall that Ry would eventually start Kindergarten. Riley was a great big brother, just about willing to do anything for Grey as long as he was no longer the baby. He would entertain him, help give him a bottle, read to him, lay down with him at nap time, take a bath with him. And in Grey's eyes, nobody was funnier than his big brother Riley. I even have a recording of Riley making Grey laugh. It really is priceless.

So on to my story . . .

I came home one afternoon from school, Greyson's smile and bright eyes awaiting me as usual. He was sitting in his bouncy chair on the table in the living room. The closer I got to him, the quicker his little legs would kick. I unstrapped him from his chair and picked him up to give him love. And as I picked him up I felt something sticky on his onesie. After inspecting it, I concluded that it was gum.

"Billllllllll ! ! ! Why does the baby have gum on him?"

"What? He has gum on him too? I had gum on my shirt when I woke up from napping with him."

It was a mystery, one that pointed us right to his big brother.

"Riley ! ! ! Why do Grey and Dad have gum on them?"

Bill, Ry, and Grey took a nap together every day, Ry on one couch, Bill on the other with Grey on his chest. Ry always woke up first, followed shortly by Grey. Daddy was always the last to wake up. It was common for Ry, once he awoke, to go over to Grey and start to play with him.

Rewind to the day before. On this particular day, once Riley got bored and wondered away from Grey, Grey decided that he would go with him. He squirmed and rolled his way off of Bill's chest. As he fell, Bill awoke and caught him right before he hit the ground.

Apparently, this really worried Ry, worried him enough that the following day, he chewed a whole pack of gum and placed it in between Bill and Grey, so that they would be stuck together.

That's how much Ry loved Grey! And when Grey died Riley cried, saying that he was no longer a big brother. It was hard to convince him otherwise. But I remember after Grey's memorial I carried Grey's little urn into the house and set it down on the table. Ry had lots of questions, as to how that could be Grey. After what I felt were not the best explanations, Riley ran to his brothers screaming, "Guys, guys, Grey's home! I'm still a big brother!"

The best big brother . . . always.

A Spirit That Soars

2009-07-06T20:22:00.007-05:00

I've been quiet for a while, not for any real reason, other than being busy with my klutzy mom :) .

I've joined a mother's bereavement group. It's work, emotionally, but that's OK.

At times, through this journey of Grey's loss, certain things hit me smack in the face, affirmations that the choices we made were the choices best for Grey.

This Spring there was a little boy at the Little League fields only a few days younger than Grey. Early in the season I couldn't even look at him. It just hurt my heart. As the season went on, he would seek out my attention, and towards the end of the season, I would seek out his. At one of our last games I saw my mom watching him. She asked how old he was, and I told her. Tears filled her eyes. Then I said to her, "Mom, that could have never been Grey. Grey couldn't have run, couldn't have thrown a ball. Grey was stuck, stuck in a broken body." I don't know where the words came from, but they came. I remind myself of those words quite often.

Grey's broken body could have never fully housed his spirit. His spirit was too strong. That's why he had to go. He had to break out of that body and soar, for all the world to see. Moms have to let their children fly. I just had to let mine go a little sooner than most.

And for some reason today, I am reminded that he soars. I see him in places never imaginable. I see his spirit, no longer frustrated with his body's inability to do as he wanted. And as his mom, it gives me peace to know that he is now truly who he was meant to be.

Dearest Grey,

Fly high and play hard Little Man. Your broken body no longer burdens you.

Love,

Forever Your Mom

A Lasting Legacy

2009-06-29T22:55:00.005-05:00

The Herald-Zeitung did a follow-up article on Grey, "A Lasting Legacy".

http://herald-zeitung.com/story.lasso?ewcd=96f1177f57a841db

For those of you that live in the area, it will run in tomorrow's paper, 6/30/09.

**Although it is sited in several different articles that we have expanded screening to test for 48 disorders, we have actually expanded screening to 52 disorders. That places Texas in the top 7 for UNS in the nation.**

Nana Turns 70!

2009-06-29T21:42:00.003-05:00

Today my mom turned 70 years old! How did that happen?

Riley, being his usual self, said, "Nana is 70, 80, 90, 99 . . . Nana is almost dead!" I love that boy!

My mom is the best . . . the best mom, the best nana, the best friend. I don't know what I would have done without her this past year. She was with us every minute of every day the last week of Grey's life.

I don't think there is anything harder than losing your baby. But I think that watching your baby lose her baby has got to be close.

I love you Mom, more every day.

A Lit Candle

2009-06-28T22:18:00.007-05:00

I have a story to share that my mom told to me.

Every night in Heaven God gathers his baby angels. Before he tucks them in, they join together and walk, and sing, holding their lighted candles. Every night, there is one little boy whose candle is never lit. So one evening another little boy runs over to him and offers to light his candle for him. The first little boy replies, "It's no use. My mom's tears always put it out."

I don't want Grey to be that little boy. I would hate to think that he could not celebrate his beautiful life because I have dampened it.

What? A Blog Award?!

2009-06-28T16:14:00.003-05:00

Wow! A blog award? How cool is that?

I received the award from my "teacher across the hall" friend Misti. I tease Misti a lot, as to how she makes me feel more sane because she is so crazy. Truth is, although she is crazy, her heart is enormous! She was the one who got me interested in blogging in the first place. And, blogging has turned out to be very healing for me. In addition, it has really helped me to get Greyson's story out to the world.

Although I really enjoy reading Misti's blog entitled "Ag Teacher's Wife", I have more recently enjoyed her newest blog, "Misti's Moments". The girl has a true talent for photography. And in keeping true to her enormous heart, when I asked her to photograph a friend's family and her daughter's 1st birthday party, she did not hesitate to say yes, even though she's going to have to make a trip to Houston with me.

There are two people that I would like to pass this award on to. The first would be to my husband Bill. However, I will not do this officially because I am sure he would not want a pink flower posted on to his site. But, if you get a chance stop by "Hey Dad's" blog, check it out. It is a rare look into the thoughts and feeling of a grieving father. With the passing of his baby boy, Bill's life has changed drastically, and is continuing to change. It will be an interesting journey to follow.

Now, officially, the award goes to Carrie at "Little Miss Hannah". Carrie's daughter, Hannah, has been diagnosed with a rare form of Gaucher's Disease. Carrie is looking for a cure, and doing a damn good job at it. Her story is not only raw and real, but so inspiring. Trying to describe the blog, and Carrie , I'm finding is hard to put into words, still being a little raw myself. Through her blog, we have become friends and have even met in person. I am now lucky enough to call her a friend. I look at her in awe. You will too.

All blog awards come with rules so here they are:

#1 Grab the Award and link the person whom you got the award from.

#2 Pass the award to different bloggers whom you think are deserving of this award.

#3 Write a post about the award and there you’ll link the person who gave the award to you and those people who you’d like to pass the award.

#4 Continue your passion in writing because your hard work will always be appreciated.

Thinking With A Clear Head

2009-06-25T22:20:00.004-05:00

It has been nice, that since I have known for certain that Greyson's Law was signed, to be able to think with a clear head. Although Greyson is still ever present in my mind, he is starting to resurface as the little boy I have been waiting to remember, not the boy that died from Krabbes Disease.

I have memories of him sitting in his bouncy chair as I walked through the front door, the excitement in his eyes far surpassing the movement of his body. I remember how he use to let the summer breeze wrap around him as we went for evening walks. Sometimes it would take his breathe away. I remember the stiffening of his body in anticipation on the bathroom floor as I turned the bath water on. I remember the open mouth of his sweet kisses on my lips.

I was so afraid, that in the craziness of it all, I would forget the things I loved the most about him. But, I have not. And I notice, the more I celebrate his life, the more freely the memories come. It seems as though it is only when I am drowning in sadness that I struggle to bring his memories afloat.

It just seems to be easier, for me, to remember and love Grey for who he was and what he stood for. His disease will not take me too.

Grey's Website

2009-06-25T01:52:00.002-05:00

I finally got brave enough to take over Grey's site from my brother Paul (thanks for the first 6 months brother!). It has a few new pages and a new video. Check it out and let me know what you think.

www.greysgift.com

Celebration

2009-06-23T22:11:00.010-05:00

There are some things that I just can't put into words. Sunday's celebration was one of those things. So here is my thank-you in pictures. I love you guys!

Governor Perry signed HB 1795 establishing Greyson's Law

David & Patsy are the best hosts (and friends) ever!

Carrie, Misti, & Bill

Melinda, Albert, & Mom

Robert, Carrie, & Hannah came all the way from Houston!

Ceci & Vicki (the butterfly lady)

Rod, Erin, & Bill

Misti finally meets Hannah

Gov. Perry Signs HB 1795 Into Law

2009-06-22T14:34:00.012-05:00

On June 19, 2009, Gov. Perry signed HB 1795 establishing Greyson's Law.

Greyson's Law, effective in Sept. '09, will add 20 disorders to Texas' newborn screening panel and establish an advisory committee to oversee it's future expansions. Nearly 150 babies per years will test positive for one of these additional disorders, with Greyson's Law now saving them from disability or possible death.

Below are a couple links to see HB 1795's progression. It's been a long, emotional road. Thanks to all who chose to make this journey with us.

http://www.legis.state.tx.us/BillLookup/Actions.aspx?LegSess=81R&Bill=HB1795

http://www.legis.state.tx.us/BillLookup/BillStages.aspx?LegSess=81R&Bill=HB1795

Also check out Hunter's Hope site as they pay tribute to Grey:

http://www.huntershope.org/default.asp

Dearest Grey,

You changed the world, Little Man, even though it meant you would have to leave us. Thank you. I love you, with everything I am and everything I have. I will celebrate you every day!

Seth took the above picture for you on one of our visits to the capitol. Isn't it incredible?! I promised him that when your law passed I would post it for the world to see.

Love,

Forever Your Mom

Why I Am

2009-06-21T00:57:00.004-05:00

Dearest Grey,

As a new year approaches I have some promises to make; promises to you, promises to me.

Today not only marks my 37th birthday, it also marks Father's Day, and most importantly the day that HB 1795 becomes Greyson's Law. So as your legacy starts, I'm afraid that some things, too, must end.

I don't even know where to start, but I'll do my best to try.

I know Grey that I am starting to heal, and I know that you want that for me. Accomplishing Greyson's Law closes a door for me. Through this whole process you have been in the forefront of my mind, nearly all consuming. At times I was frustrated, angry. Trying to separate the legislative process from my baby boy, at times, was very difficult. And as much as I needed you to be the face of Texas' Newborn Screening, I longed for you to just be my baby. My baby that I could just stop and grieve for. So today Grey, I promise to take you back and I choose to share you with only those who deserve you. I have met many great people through your loss Grey. The people who continue on this journey with me, will do so because they love you.

Today, I promise to let myself feel your loss. But in feeling your loss, I promise to choose to celebrate your life. To look into your eyes was to see unconditional love. To be lucky enough to have given you those eyes is at times overwhelming to me. But you were chosen for me, and I was chosen for you. And although I ache for you everyday, I would ache a thousand times over just to have known you.

And today Grey, I promise to get out from underneath myself and take back some of the qualities that made me who I was. I know Grey, that I am a different person because of your loss. But I also know that your loss has made me a better person. In everything I do, I want you to shine through me. I want to be the friend who listens. I want to be the mom that plays. I want to be the wife that is non judgmental, the daughter that is thoughtful. It has been a long time since I have been able to get out of my own way and think of others. But today, I take the sensitivity that you have shown me, and I share it. I listen, I feel, I love much greater than I ever have before.

There is a great line in the new DMB song "Why I Am". It says, 'Out of my head and into the room, hello.'

Today, I say good-bye to part of you.

But, I also say hello.

Love,

Forever Your Mom

You Will Make It

2009-06-20T00:44:00.004-05:00

Given to me by my "sister", when I needed it the most.

You Will Make It - Jem

Go to bed everything's alright
Don't know the whole world's changing
As you sleep through the night
Wake up slowly and it's a different world

Hear the news and the floods begin
Screams so loud but only felt within
Heart is shattered
The pieces can't be found

I feel your pain,
I wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

Months go by, still living in a daze
Don't know what you've done
With the last seven days
Soul is numb and life is like a dream

Helping hands but you push them away
How could they understand
Don't wanna share your pain
Afraid to heal, 'cause that would mean goodbye

I feel your pain,
I wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

One day sunlight hits a photograph
And it makes you smile
The memories dance around you now
And they make you smile

You're not alone
You'll never be
Just like the stars
They oversee
And they whisper to you
You're still, you're still,
You're still, you're still alive

I feel your pain, I
wrote this song for you, for you
You will make it, you will make it through
I promise you, he would want you to

Do not stand at my grave and weep
I am not there I do not sleep
I am a thousand winds that blow
I am the diamond glintson snow
I am the sun on ripened grain
I am the gentle autumn rain
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight
I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there; I did not die