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.

It's In Our Genes

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

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

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

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

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

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

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

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

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

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.

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 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!