Wednesday, June 30, 2010

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.

Tuesday, June 29, 2010

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.

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

Friday, June 18, 2010

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.

Tuesday, June 15, 2010

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.

Monday, June 14, 2010

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!

Sunday, June 13, 2010

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.

Friday, June 11, 2010

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.