Thursday, August 4, 2011


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."

Tuesday, May 31, 2011

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.

Monday, May 16, 2011

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.

Monday, March 21, 2011

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!

Saturday, January 1, 2011


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?