Hello Again

It has been over a year since I have blogged. That's a long time. A lot can happen in a year.

First off, I am proud to say that by my 40th birthday I managed to lose 40 pounds! I also have become an avid runner (I know, I can't believe it either)! I still have a few more pounds to go and a few more areas to tone, but all in all I feel that I'm in the best shape that I've been in since high school.

Last weekend I cleaned out my closet and ended up taking 11 bags of clothes that were too big for me to Hospice. They have a resale shop here in town.   Going back to Hospice is always bitter sweet for me. The lady who took my clothes asked me why I chose to bring them there. My reply, "Hospice took care of my little boy like he was their own." I don't think she expected that answer. My mom, my aunt, but not my son.


Grey has been on my mind an awful lot lately, which I guess is my reason for blogging. Therapy. Every new school year brings about new people who have never known me as Grey's mom. That stinks. Don't get me wrong, I love sharing his story. It just makes me sad that there will always be a part of me that they will never know. But, on the positive side, meeting new people reminds me that I am healing. Grey's story flows much easier now, in words not in tears. Some of my newest friends have been my saving grace. In no way am I discounting my friends who have been through Grey's loss with me. They will always be very dear to me. But I have a great appreciation for those friends that have willingly jumped into my life "after Grey". Those people have convinced me, that through it all, I still have something left in me to give, something of value to them. With baggage in hand, they have offered to help carry my load. They have thrown themselves into my journey, having not even known Grey. I am so lucky to have those people in my life. They are amazing!


Again, I come back to the best advice ever - "Surround yourself with those who you want to be a reflection of and who want to be a reflection of you" - Cecilia Perez

So here are my reflections - 
A Potterhead
A female version of my husband with awesome sunglasses
The male version of my husband, also with awesome sunglasses that I bought for him
A 73 year old fighting retirement
A mini-me
A woman whose personality matches her "tatas"
Hannah's mom
The people who wear my son's name across their chest by choice

You know who you are. Thank you. Love.

Reflections

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

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

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!

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

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

Happy Birthday & Merry Christmas Grey Grey.

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

What Are The Odds?

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

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

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

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

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

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

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!

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

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 . . .

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

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

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

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.