Why I Am

"Out of my head and into the room, hello."

It's been a long 7 months, 2 weeks, and 2 days. But I think I've finally come out of the fog that accompanied Grey's loss.

Ring Around The Rosie

Early Friday morning I had the best dream about Grey. It is rare that I dream about him. The first time I dreamt about him, it was dark and I couldn't see him. I just knew he was there. The only other time I dreamt about him I was holding him, with his back to my chest. I remember feeling the weight of him, but again there was not much interaction. But yesterday's dream has by far been the best dream I have had about Grey.

Let me preface this by saying that I do believe that Grey is still with me. I see signs everyday of his presence. Every night before I go to bed I talk to him and I ask him, that if he can, I would love for him to visit me. I also believe that he knows I am just now coming to a place of peace, where I am able to be with him in my dreams but still let him go when my eyes open. So, this is the gift he gave to me yesterday morning.

I was in a beautiful place, outside, and the sky was a rainbow of colors. There was a cool breeze and as I looked out into the field I could see the back of Grey. His crazy hair was blowing in the breeze. He was with a group of children his age and they were all holding hand in a circle. He turned around and looked at me, with only the smile that he had, as if to say, 'Do you see me? Do you see what I can do?' He turned back around and went around with the group, falling down, jumping back to his feet, going around again. Between each time he would turn to me and flash that smile of his again.

It was like he was trying to show me that his spirit can now do things that his body never could. He had friends, and I wondered if they weren't the children of the other Krabbes families. The giggles coming from all of them, it was intoxicating. He kept looking at me, to make sure that I was watching him, like he was insistent in getting his message across. He needed me to know that he was OK, and that he was happy.

Dearest Grey Grey,

I miss you so much. And although my heart breaks with your loss, it soars with excitement as I think of who you have now become. I know that it would have never been fair to keep your spirit trapped inside that little, broken body of yours. When we decided to bring you home and let you pass here, I was afraid that I would forever be haunted by the images of your death process. But I was wrong. In your passing, at the very end, I saw that your body was just a shell. I could feel the strength of your spirit with me, helping me to let you go.

On the outside Grey, you were such a beautiful little boy. But on the inside, well, I just don't have the words to describe you. Maybe, like the sky in my dream.

I Love You Little Man,

Forever Your Mom

The Stars At Night

Tonight was a night we had been waiting for for quite awhile. Tonight, Hope Hospice revealed their yearly quilt. Every year they make a quilt using material from loved ones lost. This year, Greyson was on their quilt.

At the time that Hospice needed material, I couldn't yet bring myself to part with any of Grey's things. I went out in search of material that reminded me of Grey. I found some at the very first stop. It was green, with monkeys on it. It looked just like the pajamas that he took with him. It was perfect. And to make it better, a friend from school embroidered his name on it.

The theme of the quilt was "The stars at night are big and bright, deep in the heart of Texas". I thought it was really appropriate for Grey. We always said he was our shooting star; bright, brilliant, gone too soon. The Texas theme fit perfectly with all we did with Greyson's Law, having to work with the Texas Legislature. We were honored to have our son's star on the quilt.

But what amazed me most was the number of strangers who knew who we were because of Grey; people who worked for Hope Hospice, people who worked at the church where the event was, people in the community, all thanking us and congratulating us on Greyson's Law.

It makes me so proud, that even though he's gone, Grey continues to touch and educate people.

To all of you that introduced yourselves and told us of how you knew Grey, thank you. I can't even explain what it feels like to know that others have benefited from my baby's loss. Again, it affirms that while Grey was here, he did his job, and he did it so well. Thank you.

Thank you Hope Hospice. We are a stronger family for having you in our lives.

Life Without Grey

Life without Grey is becoming more the norm than not. At times, it feels like he was just a dream. But what a great dream he was! I can still close my eyes and see him, smell him, hear him. I know he was really here. And I know that he still is. I feel him everywhere, and it's nice.

Doctors at Duke University, who lead the research on Krabbe, asked if they could view Grey's medical records. They are always looking for similarities and differences between Krabbe kids to try to make since of this horrible disease. So we asked Grey's neurologist to send them to us. Bill and I sat together as we read over everything, including his autopsy. So many symptoms we seemed to miss. So much information, that as his mom, I really didn't want to know. I can still see his doctor at our last appointment, shaking his head in disbelief, as he told us that he never thought he couldn't fix him. I think we all mistook Grey's spirit for his health. He was just so sick. But you would have never known it.

Grey's spirit is what is helping me to heal. If you could have seen it, seen his spirit leave his shell, leaving behind his poor broken body, you'd know that there is nothing left for me to do but to celebrate his life. And now, that broken body no longer contains him. He's everywhere. He guides me. Every day he shows me gifts that he's given me. Gifts that I would have taken for granted before, or just completely missed.

Just within the last month, I have really accepted Grey's loss and found peace within it. He really did change the world, and he changed my world. I will never be who I was before this. I wouldn't want to be that person anymore, although at one time I thought I would miss her. I am coming out of this a better person. To be any less would not do Grey justice.

I struggle every day to remember to be who Grey would want me to be, to make him proud. And in becoming that, I continue to heal. I have not seen many of you in a couple months. But I think you will be proud of who I've become. I think I've been able to keep the parts of me that you as my friends loved. But I am excited for you to see what Grey's loss has made me. I'm excited for you to see that I have made it out of this still intact, stronger than I ever anticipated.

Hunter's Hope 2nd Annual Family Every Step Walk

As many of you know, the support of Hunter's Hope was vital in helping my family to establish Greyson's Law. Now, it's my turn to give back. Please sponsor me, in memory of Grey, as I join Jim Kelly and other Krabbes families in New York for the Hunter's Hope 2nd Annual Family Every Step Walk.

Every Child, Every Time, Everywhere.

Click here for more information.

Bill, Nicole, & Senator Uresti On SA Living

Bill, Senator Uresti, and I were on SA Living this morning. Below is the direct link to the video.

http://www.woai.com/content/livingvideo/default.aspx?videoId=717231@woai.dayport.com&navCatId=13&articleID=717231

They also did a write-up. Below is the link to the news story.

http://www.woai.com/entertainment/story/Update-Greysons-Law-to-Take-Effect/_q9AjfvcfkiIjcqRRdcTTw.cspx

SA Living On 7/16/09

Bill and I are honored to be appearing with Senator Uresti on San Antonio Living this coming Thursday, the 16th, at 10:00 am.

It seems like only yesterday Bill and I were there discussing the possibility of Greyson's Law. Now it's a reality, thanks to Senator Uresti, Representative Pierson, their staffs, and all of you. Not only have you helped us to make history, you've given our Grey a lasting legacy that will save countless little Texans.

Seven Months

This is my favorite Grey and Riley story. Again, I try hard to celebrate Grey's life on this day, this day marking seven months since Grey broke free from his horrible disease.

Bill and Ry had five months home with Grey, before summer would come leading to the fall that Ry would eventually start Kindergarten. Riley was a great big brother, just about willing to do anything for Grey as long as he was no longer the baby. He would entertain him, help give him a bottle, read to him, lay down with him at nap time, take a bath with him. And in Grey's eyes, nobody was funnier than his big brother Riley. I even have a recording of Riley making Grey laugh. It really is priceless.

So on to my story . . .

I came home one afternoon from school, Greyson's smile and bright eyes awaiting me as usual. He was sitting in his bouncy chair on the table in the living room. The closer I got to him, the quicker his little legs would kick. I unstrapped him from his chair and picked him up to give him love. And as I picked him up I felt something sticky on his onesie. After inspecting it, I concluded that it was gum.

"Billllllllll ! ! ! Why does the baby have gum on him?"

"What? He has gum on him too? I had gum on my shirt when I woke up from napping with him."

It was a mystery, one that pointed us right to his big brother.

"Riley ! ! ! Why do Grey and Dad have gum on them?"

Bill, Ry, and Grey took a nap together every day, Ry on one couch, Bill on the other with Grey on his chest. Ry always woke up first, followed shortly by Grey. Daddy was always the last to wake up. It was common for Ry, once he awoke, to go over to Grey and start to play with him.

Rewind to the day before. On this particular day, once Riley got bored and wondered away from Grey, Grey decided that he would go with him. He squirmed and rolled his way off of Bill's chest. As he fell, Bill awoke and caught him right before he hit the ground.

Apparently, this really worried Ry, worried him enough that the following day, he chewed a whole pack of gum and placed it in between Bill and Grey, so that they would be stuck together.

That's how much Ry loved Grey! And when Grey died Riley cried, saying that he was no longer a big brother. It was hard to convince him otherwise. But I remember after Grey's memorial I carried Grey's little urn into the house and set it down on the table. Ry had lots of questions, as to how that could be Grey. After what I felt were not the best explanations, Riley ran to his brothers screaming, "Guys, guys, Grey's home! I'm still a big brother!"

The best big brother . . . always.

A Spirit That Soars

I've been quiet for a while, not for any real reason, other than being busy with my klutzy mom :) .

I've joined a mother's bereavement group. It's work, emotionally, but that's OK.

At times, through this journey of Grey's loss, certain things hit me smack in the face, affirmations that the choices we made were the choices best for Grey.

This Spring there was a little boy at the Little League fields only a few days younger than Grey. Early in the season I couldn't even look at him. It just hurt my heart. As the season went on, he would seek out my attention, and towards the end of the season, I would seek out his. At one of our last games I saw my mom watching him. She asked how old he was, and I told her. Tears filled her eyes. Then I said to her, "Mom, that could have never been Grey. Grey couldn't have run, couldn't have thrown a ball. Grey was stuck, stuck in a broken body." I don't know where the words came from, but they came. I remind myself of those words quite often.

Grey's broken body could have never fully housed his spirit. His spirit was too strong. That's why he had to go. He had to break out of that body and soar, for all the world to see. Moms have to let their children fly. I just had to let mine go a little sooner than most.

And for some reason today, I am reminded that he soars. I see him in places never imaginable. I see his spirit, no longer frustrated with his body's inability to do as he wanted. And as his mom, it gives me peace to know that he is now truly who he was meant to be.

Dearest Grey,

Fly high and play hard Little Man. Your broken body no longer burdens you.

Love,

Forever Your Mom