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.

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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.

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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!