Wednesday, December 31, 2008

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.

Tuesday, December 30, 2008

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.

Sunday, December 28, 2008

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.

Saturday, December 27, 2008

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.

video

Thursday, December 25, 2008

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.

Wednesday, December 24, 2008

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.

Monday, December 22, 2008

Arms Open Wide


I've been waiting, waiting 1 week and 3 days, to dream about you. Like I am looking for a sign from you that you are OK. Then tonight I dreamt that I was holding you and stroking your crazy hair. I could smell it. But then I woke up and now I don't know what to do.

I moved out to the front couch and turned on the Christmas tree. It was the last place that we were, when I know that you were still fully with me. We sat there together for at least 30 minutes until we both drifted off to sleep.

I turned on my ipod and fat cat Jade jumped up on my stomach and laid down on my chest, like she was trying to fill your void. I know she's trying, but it's just not the same. I wonder if tears can short out the ear buds to my ipod. That would stink.

I miss you so much Grey Grey. Sometimes it feel like it takes every ounce of energy I have in me just to smile. I know you don't want that for me. I keep telling myself that I am too proud of you to be sad. But I need more signs Grey. I need to feel your spirit, even though your body no longer exists. My arms are so empty.


How To Say Goodbye - Michael W. Smith
Tell me when the time we had slipped away
Tomorrow turned to yesterday
And I don't know how
Tell me what can stop this river of tears
It's been building up for years
For this moment now

Here I stand
Arms open wide
I've held ya close
Kept ya safe
Till you could fly

Tell me where the road ahead is gonna bend
And how to harness up the wind
And how to say goodbye
Tell me why Why does following your dreams
Take you far away from me
And I knew that it would
Tell me how to feel the space you left behind
And how to laugh instead of cry
And how to say goodbye

Here I stand
Arms open wide
I've held ya close
Kept ya safe
Till you could fly

Tell me where the road ahead is gonna bend
And how to harness up the wind
And how to say goodbye

Sunday, December 21, 2008

Thank You


Imagine, if you can, 190 blue and yellow balloons being released all at the same time by your closest friends and family. How often have you ever seen that? And how great is it that I can replay it in my mind as often as I like? Thank you.

I have so many thank-yous and although I hesitate to name names, in fear of forgetting someone or hurting feelings, I just really need to do this. So please, forgive me. Just because you may not be mentioned doesn't mean I'm any less thankful for you. At times I'm just so overwhelmed.

Mark - For finding the courage, the strength, and the words that so beautifully rolled off your tongue. I cannot tell you how many people have called to say how inspiring your service was. For understanding our request. For telling us it was OK to be angry at God, and explaining why. For telling me that to be able to love hard you had to be willing to hurt hard. For letting me see that you are also a dad and a grandpa. I know this was not easy for you. The comfort you brought us was indescribable. It's crazy to think that you only walked into our home just under two weeks ago.

Jay - For your tears. You earned your money on this one. I hope you never have to do it again. Never in a million years under these circumstances would I have in trusted anyone with my baby. But with you, I knew he was safe. You promised me you would take care of him, and you did. It was the only reason I could sleep at night.

Syndi from Hospice - We would have never been able to keep Grey at home without you. I couldn't put a price on your knowledge and caring. Your commitment to our family was what you would have given to your own. Once everything was over, I missed you greatly. I will never be able to thank you enough. In just a week and a day, Grey became your baby too.

Karri from Hospice - For taking care of my boys . . . and the phone book.

Aunt Gigi - For your immediate presence and signature.

Dr. T - For taking ownership, even when it would have been easier to let Grey be just another file.

Luke - For choosing to stay when it would it would have been much easier to leave. You've had to grow up fast these past few months. I'm so proud of you.

Bill - For your chest and your heart that Grey so dearly loved. I wouldn't have had it end any other way.

Melinda - For being my rock. For being there when Bill told me, and not losing it so that I could. For spoiling my kids. For always taking pictures. For your great-grandmother's cross because you couldn't always physically be here. For crying late at night when I wasn't around. For being my go between. And for having to draw a diagram so that everything would be perfect. I know it must suck to have a best friend who just lost her baby. But it sucks less for me now that you're around.

Stephanie & Crew (you know who you are even though I don't) - No one should ever have to blow up that many balloons in that little of time. The result was so beautiful, something I will play over and over in my mind.

Misti - Just for being the mess that you are. You make me feel less crazy, and I love you for that. For your passion. For bringing Brayden to Grey's memorial. It made Riley's day.

Mitzi - For telling me that Grey would always be a whisper in my boys' ears, helping them to make better decisions. I'll never forget that.

Ceci - For having such a hard time letting him go that Thursday night, but knowing you had to anyways.

Hillary - For the connection you had with Grey from the very beginning. I don't think I need to say any more.

Dani - For mothering Bill and I through this whole thing. I know how hard this has been for you. You played a bigger part in this than most people will ever know. He was your baby too, from the day we found out we were expecting.

Cindy - For loving Grey's growl, and not being afraid to tell everyone about it. You made me smile on one of my worst days.

Emily - For telling me to love him hard. I did.

Richard - For the bank. For standing in the parking lot and waiting for me when you were asked not to. For being my protective, big brother even though you knew you couldn't fix it. For knowing that there were days that I couldn't look at you because I saw my pain in your face. For knowing that there will be more of those day, and being OK with it.

Darlene - For telling me that I would need to see Grey sick in order to let him go. Never did those words leave my head. You were absolutely right. For the rosaries.

Dana - For taking care of my boys at GFES. I know I never have to worry about them when you're around. For your friendship. A football field does not separate us.

Dad - For the beautiful things that you said at Grey's memorial. I never knew you had that in you. Now I know it was always there. I just never took the time to see it. I love you. For giving Bill the month at home. We would never be able to pay you back for that, even if we were millionaires.

Mom - For spending the last week with us, non-stop. As hard as it was for you to watch, I would have never been able to go through it without you. And for buying Grey Christmas presents just to make me feel better, knowing you'd have to take them back. Just when I think I can't love you any more, I do.

Paul - For reconnecting. I've missed you so much. For throwing yourself into Grey's cause. For knowing that nothing in the whole world would be cooler than a Grey Street sign.

Glenn - For making the trip. For crying when you thought I wasn't looking. For playing on the floor with my boys.

Larissa - For being the one Grey always smiled at and willingly went to. I know how hard it was for you to watch your nephew slip away, but you chose to watch anyways. For finding Oatmeal. For keeping the boys instead of being with us, because you knew that's what I needed most. If I had to have a sister, I would want her to be you.

Kyle - For giving up your deer lease for a weekend. I barely know you. It's been my loss.

My CHMS Family - For the support, the tears, the donations, and the love for my family. You all have taught me how to be a better person. You have given my strength just by being. I love you all.

Jarrett - For treating Grey like he was your Jacob. It was obvious in your PowerPoint. As much as I wanted to take pictures of the balloons, I was frozen in the moment. I knew that you would do it for me.

Penny and Stacy - For pictures that I would have paid a million dollars for. You captured us on our best and worse day, yet the worse was never seen. I will cherish those pictures for as long as I live.

Chelsy - For knowing what my husband likes from Chic-A-Filet. You know it's more than that. I just don't know how to put it into words. I've only known you for a few months. You have jumped into our lives at the worst time and opted not to jump out. Your strength has been a blessing. Thanks for letting me see you cry.

I see Grey's spirit in all of you.







Saturday, December 20, 2008

And Life Goes On . . .


We just got home from Grey's memorial. I'll talk about that later after I've had time to let it all sink it.


We brought Grey home, in his little blue urn. It was such a relief to have him back with us. Riley looked at it and we told him what it was. He was so excited. "Grey's home! I'm still a big brother!" As I type this, he has already asked to take him off the mantle so that he could be with them as they play.


And life goes on . . .

Minus


This is DMB's newest photo to promote their Spring tour, minus LeRoi Moore. He died this past fall. He's probably already played "Somewhere Over The Rainbow" to my Grey. It's an affirmation to me that life goes on, no matter how big your loss. See you in May boys.

Friday, December 19, 2008

The Finality Of It All


Grey's memorial is tomorrow. It's been a long week. Oh my God, it's been a week since we lost Grey. I guess it's OK to think out loud when you're blogging.


There are so many people that have done the most incredible things for us. My family has received food, gift cards, and money from both friends and complete strangers. I have reconnected with friends and family that I thought I was too busy to reconnect with. I heard my nephew say "I want that," when I showed him Dr. Pepper. I gave it to him when his mom wasn't looking, twice. I've sat at a bank for two hours while my friend signed his life away to open a memorial fund for Grey. I've cut my son's obituary out of the paper. I've watched a PowerPoint of Grey that another friend made a gazillion times. I've folded my baby's clothes for the last time and tucked them away in his drawer. I've cried, I've screamed, and I've laughed.


I'm not sure what tomorrow will bring, but I do know that I will not face it alone. My heart is heavy, and I ache to see so many of you tomorrow. I could not get through this without you guys. You all will be the ones to help carry on Grey's memory, and for that I could never thank you enough.

Thursday, December 18, 2008

Gingerbread House


Happy Birthday Baby. The first house of many.

We'll All Be OK

Send your own ElfYourself eCards

Wednesday, December 17, 2008

Happy Birthday Monkey

Just a little bit ago Bill and I sat on the couch and cried. Most likely before I finish this post, it will be Grey's first birthday. Our heads ache and our hearts are heavy as we realize that there are so many things that we will be unable to share with Grey, like his first birthday.
But as I sit here now, I wonder just what kind of party God throws you for your very first birthday. There were many things that Grey would not have been able to do or enjoy. He wouldn't have been able to dig into his own cake. He wouldn't have been able to rip into his presents or play with his toys. I bet God knows that I would have given him a monkey cake with jungle balloons, and he has that now. And instead of only books or musical toys that Grey could enjoy, God will give him balls to throw and trucks to push. And I've come to realize that only in Heaven could Grey really have the best first birthday.

As sad as I want to be, and as tears roll down my face, I know that Grey was just on loan. That he was sent here, to us, for a reason. And even though I don't know what that reason is, I know that he had touched more people in his 11 months, 3 weeks, and 1 day then most people will ever touch in their entire life time. He still continues to touch people. Really, how can I be sad about that?

Bill turned forty on December 3rd. Yesterday I found pictures from his party. The boys and I threw him a Star Wars birthday. When you see Grey in the pictures you can tell that he was oblivious to what was to come within the next week. He was such a happy baby, with such a sweet spirit. He lived hard, and he loved hard.

We are a stronger family because of him.

Happy Birthday Grey Grey. We have decided that every year on your birthday we will celebrate by building a Gingerbread house for you. We love you.

Tuesday, December 16, 2008

121807 Grey St.


I'm hoping Grey too was greeted by this. Once again, I'm speechless.

Monday, December 15, 2008

His Everything

I'm afraid to wash his clothes. I've worn the same shirt since Friday. I'm so afraid I'll forget what he smelled like.

I miss you Monkey.

Living Life To The Fullest


There are so many things that Grey taught me.


Our nurse told us that people die like they lived their life. And although we had been told that Grey would be unaware of what was happening to him, I can tell you that they were wrong. He wasn't afraid, he was just going out on his terms. Grey left this world fighting. I swear I saw that boy leave and come back at least three different times. Just when I thought it was over, he'd take another breath. I finally had to walk away. It was just to painful to watch. When our pastor came, we prayed for speed. Probably more for us than for Grey. Our hearts just hurt.


On any other given day, it would have been nap time. Bill laid down on their usual couch and placed Grey on his chest, head on his heart. Five minutes later, he was gone.


Grey was a fighter from the very beginning, hard-headed as they come. There would be nights that I would wrestle him to sleep. There would be days that Bill and the boys would tussle with him, his laughing uncontrollable. What his body lacked, his spirit made up for. Everything you needed to know about him, you saw in his eyes.


Grey's death has taught me just how important every breath really is. He taught me to never give up. He taught me to live each moment to it's fullest. He taught me to do the best with what you're given, and to be grateful for it.


There are many, many things we take for granted in this world. Don't ever let your children be one of them. Celebrate we will, because life is short but sweet for certain.

Saturday, December 13, 2008

Really?!

Just when you think things can't get worse, they inevitably do.

It could not have been more than two hours since a stranger drove off with my little boy that the lab called. Grey had needed one more blood test to confirm his diagnoses of Krabbes Disease. My husband took him on Tuesday, all the way to San Antonio, where hospital staff was awaiting him. Not that it was bad enough that he even had to have another test, given the little amount of time he had with us, but the only place they could find a vein was in his head. Thank God I wasn't there. The sample was sent off to California. However, the lab in SA used a tube dated 4 days earlier. On it's arrival, California disposed of it, because the sample was too old.

Because his diagnosis was presumed, not confirmed, our doctor felt we would have issues when trying to advocate for newborn screening for the disease. This meant that Grey would have to have an autopsy, something we had tried desperately to avoid. They would need to biopsy white matter from his brain. The expense would be astronomical and when we told the lab that messed up that they should pay for it, they told us we could get a lawyer.

We met with the funeral director today. He is an incredible man. He had picked Grey up yesterday. He cried when he saw him, something that he is trained not to do. Had he not cried, I probably would have never let him take Grey. Anyways, he told us that we could petition our JP for a state mandated autopsy, if she felt his death was unresolved, but that it would be hard to do. That means the state would have to pay for it. Just then, Bill's little sister called and Bill told her what we were going through. Little did we realize that Bill's sister's husband was our JP's nephew. That's right, we had gone to family functions with her and not even realized who she was or what she did. She was at the funeral home within 10 minutes, signing papers to have Grey's autopsy done immediately. It will happen in the morning. We will have the final diagnosis within days.

Sadly, the approval of our son's autopsy was the best news we had gotten in days.

I know that no matter how long I live, and no matter what I go through, NOTHING will be worse than where I am now. My heart hurts. Whenever I hear laughter, I wonder who could possibly be laughing at a time like this. But I keep telling myself, I am not going to be that angry mother who lost her baby.

Friday, December 12, 2008

Baby, It's All Right


Grey left his broken body this afternoon shortly after 2. He simply fell asleep on his daddy's chest. There was no place that he liked better.
Run and play Little Man. Heaven is yours. We'll miss you Grey Grey. Thanks for the kisses.

Baby - Dave Matthews
baby it's alright
stop your crying now

nothing is here to stay
everything has to begin and end
like a ship in a bottle won't sail
all we can do is dream that the wind will blow us across the water
a ship in the bottle set sail

baby it's alright
stop your crying now

there was a weakling man
who dreamed he was strong as a hurricane
a ship in a bottle sets sail
he took a deep breath and blew across the world he watched everything crumble
woke up a weakling again

some might tell you there's no hope in hell
just because they feel hopeless
but you don't have to be a thing like that
you be a ship in a bottle set sail

baby it's alright
stop your crying now
it's alright
so stop your crying now
be a ship in a bottle set sail

Thursday, December 11, 2008

I Live On The Corner Of Grey Street


If you know anything about me, you know that I love the Dave Matthews Band. Those stories, and many and great they are, are for another day. But, last night I sat on the couch with one of my close friends. In the midst of all the craziness, he sat and watched my Piedmont Park DMB dvd with me. I know it seems like nothing, but the familiarity of the music and his company was so comforting. My favorite song came on, Grey Street. I told him that Grey was named after that song, and he didn't know that. So if he didn't know, maybe many of you don't know. The song has just kind of followed me through different times in my life, it's meaning always changing. I just wanted to share the words with you. I'll never be able to hear it without thinking of Grey. It means more to me now than ever before.


Grey Street

Oh look at how she listens

she says nothing of what she thinks

she just goes stumbling through her memories

staring out on to Grey Street

she thinks, "hey, how did I come to this?

I dream myself a thousand times around the world but I can't get out of this place"


there's an emptiness inside her

and she'd do anything to fill it in

but all the colors mix together -- to grey

And it breaks her heart


how she wishes it was different

she prays to God most every night

and though she's quite sure he doesn't listen

there's still hope in her he might

she says, "I pray, but my prayers fall on deaf ears

Am I supposed to take it on myself?

to get out of this place"


there's loneliness inside her

and she'd do anything to fill it in

and though it's red blood beating in her now

it feels like cold blue ice in her heart

when all the colors mix together to grey

and it breaks her heart


there's a stranger speaks outside her door

says take what you can from your dreams

make them as real as anything

it'd take the work out of the courage

but she says, "Please

there's a crazy man that's creeping outside my door,

I live on the corner of Grey Street

and the end of the world"


there's an emptiness inside her

and she'd do anything to fill it in

and though it's red blood beating in her now

it's more like cold blue ice in her heart

she feels like kicking out all the windows

and setting fire to this life

she could change everything about her

using colors bold and bright

but all the colors mix together to grey

and it breaks her heart

it breaks her heart

to Grey

Wednesday, December 10, 2008

Loving Him Hard


If you're not willing to hurt hard, you're not able to love hard.


Today we met with a pastor, my dad's pastor. He married my dad and step-mom. I have known him ever since I was in high school. And although I am not a member of his church, there has always been something about him that has drawn me to him. Bill and I found so much strength in his words today. But the above words knocked me to my knees. Through this whole ordeal, nothing has hit me quite like those did.


When we found out about Grey's diagnosis another friend told me, love him hard. It's funny how people's words intertwine.


I just need to take a second to say thank you, to all of you who have been there from the beginning, and to those of you that have just joined me. Words are just not enough. When people ask me how I'm getting through this, I could show them each and every one of you.


We have loved him hard, no doubt. We'd do it all over again.

Tuesday, December 9, 2008

Baby It's Cold Outside


It snowed for my Grey tonight. My baby's seen snow.

In The Quiet Moments

It's in the quiet moments that I have the hardest time. As long as I'm busy, and making people feel better, I'm OK.

Grey is comfortable, but quickly progressing. Hospice has been such a blessing! Our nurse came out twice yesterday. It was a bad day. Grey had been so heavily sedated. My husband and I missed his personality so much. We just needed to see one more smile. We started to reduce his doses. Hindsight is 20/20. It took us almost 24 hours to get him comfortable again. He would just sort of hum to himself. We both know he is past the point of realizing what he is doing, but maybe it was to soothe. He has lost his ability to suck, leaving his bottle very lonely.

I am spent. I'm making deals. OK, you can take him, but on my terms. No one seems to be listening.

Saturday, December 6, 2008

Seth

This is my son Seth. He is 9, the second oldest. He was born with PKU (abbreviations for a REALLY big disorder). He is unable to process certain proteins. If those protein were allowed to build up, they would eat at the grey matter in his brain. He would be totally mentally retarded by the time he was 3. But he's not. He is a healthy, intelligent boy. PKU is screened for at birth. He was diagnosed at 11 days old and treated. To this day he is totally unaffected. Today I had to tell him that we were going to lose his baby brother. I had to tell him that if Grey had been screened for Krabbes Disease he could have been treated and healthy. I had to tell him that people before him had to die so that he could be tested for PKU. He asked me why his disorder was more important than his brothers, important enough to be tested. I don't know Son. I just don't know.


I can't help but feel that this whole thing is bigger than me, that I'm supposed to do something with the loss of my baby. Really, what are the chances that my husband and I are both recessive carriers for two totally unrelated disorders? Why was one of our sons spared through newborn screening while the other was ignored? I don't know. I just don't know.


I feel like we're the poster family for flawed genetics. But if you knew us, you'd know we're not a flawed family. I feel like God has chosen us, a Special Ed. teacher and a nurse, along with our sons, to make a difference. Together, as a family, I feel like we were chosen to bring awareness, to make sure that no one disorder is any less important than the other.


I wonder how Seth will make it through this. How will he not feel guilty about being tested when his brother was not? I don't know. I just don't know.

Life Is Short, But Sweet For Certain


Greyson was born a healthy, beautiful boy. When you looked at him, all you saw was eyes. People were drawn to him. His smile and his personality captivated people. I knew back then that he would be the one who would change lives. I just didn't know why.




As he grew, it seemed as though his body couldn't keep up. At times he appeared like a rag doll. When he did move, it was like his limbs weighed a thousand pounds. The ability to control his head was a chore. My husband, who is a nurse, and I knew things were just not right. At his 6 month appointment we were told he was just a lazy baby. He was the youngest of four boys and wanted for nothing. He could murmur and have his three brothers at his beck and call.




At 8 months he was still not sitting up or holding his bottle. He had begun to roll over, but stopped. He hated being on his stomach and could not push up on his forearms. He was shaking his head no-no and saying da da. His intelligence was above average, but his body was regressing to that of a newborn. We made an appointment with our pediatrician to discuss our concerns, not wanting to wait for his 9 month appointment. It was this day that our whole world changed.




Immediately we were sent to the hospital for testing. Our doctor was thinking MD. My heart hurt. Grey's CPK levels came back a bit elevated and we were then sent to a neurologist. After 3 months of MRIs, muscle and nerve biopsies, a spinal tap, and tons of blood work results revealed a fatal disorder, Krabbes Disease. This is a leukodystrophy in which the white matter of the brain deteriorates. Worse yet, if tested though newborn screening, it could have been treated and Grey could have been spared.




Yesterday, Hospice came out to our house. Our neighbor witnessed as we signed a "Do Not Resuscitate" order. Grey's 1st birthday is two weeks away. Christmas is three weeks away. We don't know if he'll see either.




My hope is that through his loss we will bring awareness. My state, Texas, newborn screens for 29 of 55 treatable diseases. Unfortunately, Krabbes is not one of them.


Please join me in this journey. It is only the beginning.