Confirmation

I'm sure as many as you know, getting the diagnosis of Krabbe's for Grey has not come easy. There were spinal taps, blood draws, the final blood draw that was messed up by the lab, and finally our decision to have an autopsy performed. Dr. T. said that if we ever wanted to fight for Universal Newborn Screening, we'd need a confirmation. In our hearts we knew he was right.

He called us today, with that confirmation. Part of me was relieved that the autopsy wasn't for nothing. Part of me cringed at the horrible disease that lies dormant in me. It's hard not to feel genetically mutated, that your genes were the reason for your son's demise.

Grey had Krabbe's Disease, a classical case. Dr. T. said that with that diagnosis we needed to know a couple things. First of all classical Krabbe's has an onset period between 3-6 months. That means our other sons are unaffected. We could have them tested to see if they are carriers, but they will never be affected by this disease. He also said that we needed to know that we did the best possible thing for Grey by letting him go. Krabbe's at his age is untreatable and vicious. His case was the fastest progressing that his doctor had ever seen, which really was a blessing. I would have hated for him to go through this if he were even just a year older. Remember, Krabbe's effects the body, not the mind. Grey would have had time to become more attached to all of us, and afraid of his condition. He would have known that things weren't working right. That would have broken my heart even more that it already is.

I just have to let all of you know how great Dr. T. has been through this whole thing. From the first time he saw Grey, he took ownership of him, calling him "his boy". It would have been much easier for Grey to just be a file, especially in his loss, but to Dr. T. he was so much more than that. I would have never been able to let Grey go without complete trust in his doctor, which is hard to find these days. But from the minute Dr. T. walked into the room, I knew he was the one for my Grey, even if he couldn't fix him.

Today we got a sympathy card from him, a Hallmark card that he had taken the time to pick out. Really, how many doctors would do that? In it he wrote, "We will never forget Greyson's smile, his sweetness, and his love for his family. We will never forget his parents and their love for their son." signed Dr. T. and my staff. I've read it and cried a thousand times today.

I hope he doesn't mind me sharing this with the world. I just need everyone to know what a big heart he has, and how hard he worked to save Grey. I'll always love and admire him for that. It couldn't have been easy for him either.

So, today our confirmation was two-fold; a confirmation of the disease and a confirmation of the horribly hard, but 100% accurate, choices we made together. Now I can let the doubt go and try to heal.

This day starts the next step Little Man. Someday, with hope, there will be a law in Texas to provide mandatory screening for Krabbe's. It'll be Greyson Law. It will be just one more of many gifts you have given us, and others. I love you Baby. You make me so proud.

greysgift.com

My brother has made a beautiful site for Grey. Check it out. Pass it on. The address is greysgift.com

Let me know what you think. It's still a work in progress.

There is a big difference between your baby being 11 months and your baby being 6. Overnight we went from carseats and diaper bags to all of our kids being in school. My van feels so different without Grey's seat in it. As of yet, none of the boys have sat in his seat. I want to sell that stupid van.

I just feel like I have been robbed of 5 years, 5 years of learning, loving, and just cool baby/toddler things. I'm trying not to be angry about it, but I am. Two years ago I was ok with my baby getting ready to start school. I had prepared myself for it. Now I feel as through the rug has been pulled out from under me.

Through The Season

I wonder if there will ever come a time that I don't feel lonely. I don't know that lonely is the right word. I just feel like something is always missing. Every once in a while, I forget that something is missing, and upon it's realization, it hurts twice as much.

Yesterday we put away the Christmas decorations. I just really needed to. I couldn't stand sitting on our big couch watching the lights, as Grey and I did, anymore. I just needed the holidays to be over. I had made it through the memorial, Christmas Eve, Christmas Day, and Riley's birthday, but I was done. I didn't want to celebrate anymore.

Bill was dragging his feet to help, which isn't like him. After nagging him one to many times he finally came clean. "Maybe I need the tree to stay up a little longer. Looking at the tree was the last thing I did with Grey."

I just assumed he felt exactly as I did. I have to figure out that it's ok if he doesn't. Needless to say, the decorations came down. As usual, Bill let me win.

I've also not know what to do about Grey's room. Since it was Christmas time boxes started to accrue in there. Was no other place to hide some of the gifts. It also became the place to store the clutter from Christmas. I walked into Grey's room yesterday and it no longer smelled like him. It smelled like boxes. I completely panicked. I was like a tornado in there, clearing his room of all the unnecessary junk. I felt so relieved to get it back to how it was when Grey was still with us. I found a dirty bid still in his hamper. Sadly, I just folded it up and placed it in one of his drawers.

Today we went to Sea World to use up the extra tickets we had before the end of the season. I felt empty as I walked into the entrance with no stroller, no diaper bag, no Grey. The last time we went he was with us. It was the first and only time we took him swimming. He loved it. I was lonely as I sat and watched the Shamu show without him on my lap. I watched the other moms struggle with their babies and found myself feeling jealous. I wonder if there will ever come a time when I can look at other people's babies and not see Grey.

We did have some cool moments today though. I have to remember those. Luke rode his first ever roller coaster, with me. Ry and I got some good one-on-one time. We rode the little roller coaster and shared ice cream and a pretzel. Seth rode his first roller coaster with Luke, the Steel Eel. Just the fact that he was tall enough to ride it was a huge self esteem builder for him. And Ry finally got to touch a dolphin, after spending $20 to feed them. It was a good family day, minus Grey.

My co-worker's wife passed away on Christmas day. Her viewing was tonight. I really wanted to go, and I did with some friends. I just needed him to know that he would get through her funeral tomorrow. That he would continue to breath even though his chest ached. I was fine until I hugged him goodbye. He told me he was sorry for my loss. I told him that I knew what he was going through and we promised each other that we would do this together. We now share something that neither one of us would wish on anyone. It's a terrible thing to share. I just can't go to the funeral. I could barely walk into the place as it was. I know he'll understand.

I just don't know how the hurt from Grey's loss could get any worse. But I also don't know how it'll get better. I try to fill my life with friends, family, favorite things. But at the end of every night I still go to sleep with empty arms. Nothing can fill his void.

Happy Birthday Ry Ry

Today is Riley's 6th birthday. We had an army party for him. His little best friend spent the night at our house for the first time. There were tons of family and friends here, 22 of us. It was nice to have people over to celebrate, not to just visit because they are so worried about us. Don't get me wrong, company is always nice. It was just nicer to have something to celebrate. It makes me laugh, as wild as our house is, that our friends still chose to come and that our family actually enjoyed it. It makes me think that we are actually not as broken as I feel.

As my little nieces and nephew ran around and laughed, it was hard not to miss Grey. But I know I wasn't the only one in the room missing him and found comfort in that. If anything, my nieces and nephew were there to remind me how life is to be lived, oblivious to the sadness in my heart. I am determined not to be "the teacher who lost her baby".

It's crazy, that even in his absence, Grey is still bringing us all together. I think I've seen the biggest change in my dad. I've seen him more in the last few months than I've seen him in the last few years. No one is to blame. The idea of just being too busy engulfed us both. I realize how much I've missed him. I love the way he now interacts with the boys. I'm glad he's their grandpa.

Thanks Grey. I see the miracles you're working for me every day.

Recently

At times I get discouraged. I wonder how a broke, small-town teacher like me can really make a difference in Grey's cause. But then I remember that I have all of you. Each of you has different abilities and knows different people. And I realize again, that His whole plan is way bigger than I can understand.

He's just a few examples that have happened recently:

My brother has made a website for Grey. He's way talented. The World Wide Web . . . it's huge! I'll link it when he's finished.

I ran into a teacher at the grocery store. We worked together a few years ago. She knows our state representatives. Huge.

My neighbor, a retired doctor, came down this evening to give my boys their Christmas presents. He has really been researching Krabbe's and UNS (universal newborn screening). He got a call while he was here . It was a doctor friend of his returning his call. His friend, the top neurologist from the Mayo clinic. Who do you think that call was about?

It's hard for me to stay discouraged when all of you are working so hard for Grey. Thank you for that. Please don't ever stop.

Below is the PowerPoint my friend put together and played at Grey's memorial. It's incredible. Make sure you first scroll down to my playlist and pause it. The Powerpoint has music of it's own.

Everywhere I Looked

Everywhere I looked today, I saw you Grey. It started with the syrup on the pancakes. Whenever I smell it, I think of you. Your brothers got AirSoft guns under the tree. I know you laughed hysterically when Dad got shot in the head, especially after the lecture to always protect your head and face. Then I remembered how unfair things would have been if you were here with us, stuck inside with your musical books. Again, I had to remind myself that your Christmas in Heaven was full of all the toys you could possibly dream of.

Your dad is going to have to change his favorite foods. His favorite is cream cheese pumpkin pie. It was your favorite too. I cried as I made it. It was one of the few things you would eat right up to the very end. That, and cinnamon applesauce, which was also on the menu.

The only thing that did take you off my mind was that stupid Guitar Hero World Tour game. It was very funny. We all played it all night long, arguing as to who got to play what. I loved the drums, but I'm no Carter Beauford!

Christmas is over, and the thought of slowing down scares me. I feel like I have far too much time on my hands as it is. I guess I didn't realize how very sick you were until you were not in my arms all the time. You just always fit. You were always there. Now that you're not, I don't know what to do. I try not to feel guilty with the amount of free time I have. I try to fill it with things I love. But I always come back to you. I imagine I always will.

I'll keep your spirit close so that I don't lay down. I'll remember that you lived each day to it's fullest. I'll remember that you didn't even know how to give up. You were a fighter until the very end. I will try to replace my sadness with pride. Sweet dreams Little Man.

It's Christmas Eve Baby

Tonight I am constantly having to remind myself that if Grey were here with us now, his Christmas would not even compare to the kind of Christmas he'll have in Heaven. That's what I'll keep telling myself. We'll get through this.

Ry is watching the Santa Tracker and just doesn't understand why Santa is not yet coming to Texas, but he swears he hears "dears" on the roof.

I spent all day wrapping presents. Again, life goes on.

Merry Christmas Grey Grey. I love you.