Thursday, January 29, 2009

In The Bleachers


Dear Grey,

Last year at this time you went to your first CHMS basketball game with me. This is one of my favorite pictures of us. We sat right beneath the scoreboard. You didn't even flinch when the buzzer went off. You just hung out with me. I loved showing you off. You were so new, so perfect. Tonight, the boys, dad, and I went to our first game without you. Who would have thought so much could change in just a year? I missed you having you there with me, but I'm sure you had the best seat in the house.
Speaking of seat, Dad sat in nacho cheese. Some things never change.

Night Little Man. Play hard.

Love,
Forever Your Mom

Wednesday, January 28, 2009

Patchwork

Dearest Grey,

Today I received a letter from Hope Hospice. Every year they make a quilt for those they have lost. They ask the families to give them a piece of fabric from their loved one. When Syndi was here with you, she had told us about it. I knew right away what I would want to use for your fabric. I know it sounds crazy, but I've always loved your crib sheet. It came with the set that we bought you, but there was only one of it. I looked and looked on the Internet while you were here with us for another sheet just like it, so that even when you spit up on it I could change it and it would look exactly the same. But, you can't buy it separately anywhere. I washed it a lot. It was just so you. It was patchwork, bright with stars and cool shapes.

The problem is that I just can't bring myself to take if off your bed.

I called a friend and she said she would embroider your name on the piece that is supposed to go to Hospice. She said she would make the rest into a pillow for me. All great things, but then it is no longer your sheet. It's a piece of a remembrance quilt and a pillow.

Today I've made it through seeing the doctor that delivered you, waiting in his waiting room with a bunch of pregnant women. I've made it through talking to a friend about bereavement counseling. I kept it together all day.

Tonight I try to take the sheet off your bed and my tears gush. I just don't know if I'll ever feel whole again Grey. I don't know if this ache in my heart will ever let up. I remind myself to take the next breathe. I get ready to go to bed, in hopes that you will be there in my dreams.

Love,
Forever Your Mom

Tuesday, January 27, 2009

Sellers Photography

Ninety percent of the pictures on Grey's blog were taken by Stacy Sellers. I would have paid a millions dollars for them, but she would have never let me. I can't even put her talents into words. Check out her new site. She's incredible!

www.sellers-photography.com

Monday, January 26, 2009

Sometimes I Ache


Today was a day of highs and lows.


My husband and I spent the day up at my school, watching students in their health class present projects they had put together about newborn screening, because of Grey, for Grey. Before 1st period ended, I realized the lettering on a girl's shirt spelled out Greyson. How cool is that? He continues to touch so many. It was very healing, for both Bill and I. It was a great feeling.


However, the Krabbes community lost a precious little girl today, Zoe. She and her family fought long and hard. My chest ached a little less earlier today knowing that Zoe was finally at peace. But now it aches more for her family. It is crazy, how attached I got to Zoe and her family, simply through her blog. And I now realize how all of you must have felt towards me, with the loss of Grey.


I'd like to tell you not to ache for me, but I know that you will and that you do. I can see it in your eyes, even when you smile. I know in time we will all ache a little less. But for now, I don't know how to make the ache less, for you or I. I know, as selfish as it sounds, that I ache less because you ache with me, if that's any consolation. I know that we are all healing together and that we heal in different ways and at different rates. Sometimes I feel like I have it all under control, then someone looks at me a certain way and I'm back on the couch, stroking his hair and smelling his breathe.


I know Grey is at peace. He runs and he plays and he laughs.


I know today he met Zoe, and that makes me furious. Another baby lost to this horrible, treatable, disease.



Sunday, January 25, 2009

A Brother's Love


It seems as though I wait all week for the weekend, so that I can let down my guard. At school I sometimes feel as though I have to constantly brace myself for the next unexpected question from a curious student. And it's OK. I want them to know they can ask me anything about Grey, I'm just sometimes caught off guard.


But once I get home for the weekend, I count down the hours until I can go back to work. At home, I'm just so lonely. Bill works all weekend. The boys play with each other. I just feel empty without Grey to hold.


It's like a double-edged sword. My support system at school is incredible. Most days I long to be there with my friends, dealing with the little dilemmas of the day, keeping busy, making a difference, laughing. But you just never know what's going to come out of the mouths of middle school kids. At home, I can be unguarded, cry if I want to cry, sleep to try to dream of him. But sometimes the emotions are just too overwhelming. I wonder if I slept long enough I would finally dream of him. Since he's been gone, I've only dreamt of him once. It's like he knows that if I dreamt of him, I never want to wake up. Thank God I have the boys home with me to keep me going.


Last night as I was trying to go to sleep I was thinking of some funny Greyson moments. I think my favorite one involves Riley and gum. Ry was home with both Bill and Grey a few months before he started kindergarten. In the afternoon, they would all take a nap, Bill with Grey on the couch. Riley was always the first one to wake up, and on this particular day Grey was up too, leaving Bill the only one still asleep. This was before Grey was symptomatic. When he saw that Ry was up he tried to roll off of Bill's chest to get to him. Thank God Bill reacted to his movement and caught him as he rolled off the couch. It scared all three of them. The next day I came home and as I picked Grey up, I noticed he had gum stuck to his onesie. I asked Bill if he knew that. He said he didn't, but he did tell me that he too had gum stuck on his shirt, and didn't know why. That was when we noticed the look on Ry's face, as he started to laugh. We had found the culprit! Apparently, Riley did not want his brother rolling off of his daddy's chest anymore. He thought gum would keep them stuck together . . . a lot of gum! This was the kind of love Ry and Grey shared.
Above is my favorite picture of Ry. You can just see the mischief in his eyes!

Saturday, January 24, 2009

Family Movie Night




Tonight, Seth, Riley, and I had a family movie night. I let the boys pull their mattresses off of their beds and bring them in the front room. I started a movie and went into the kitchen to make some popcorn. As I walked out of the kitchen, popcorn in bowl, I stopped dead in my tracks. Seth and Ry were snuggled on Ry's mattress. In between them was Grey's urn. Again I'm reminded that although Grey is not physically here, he's still here.

Thursday, January 22, 2009

Blessings Through Grey's Loss


As my heart aches for Grey, my mind tells me to be positive. So . . . here are some blessings I've received through Grey's loss:


Hearing my niece Daniela say, "Again".


Baby blue wrist bands with "Grey's Gift" written on them.


Kids at school asking for blue wrist bands with sincerity.


Co-workers that have turned into great friends.


Great friends that have turned into family.


Hugs from total strangers.


Visits from both of my brothers.
A surprise visit from my best friend in high school.


Her son giving me the autographed picture of Jim Kelly that he just won.


Jim Kelly knowing my baby's name, and acknowledging it.


Cash's eyes.


The memories of Grey's memorial and benefit.


Knowledge of a better treatment for Seth's PKU, from a total stranger (who was only 15).


Grey's story on WOAI.


Amazing pictures of Grey.


8th graders writing to legislators.


A huge poster of Dave Matthews.


Grey's spirit with me every minute of every day.


Tuesday, January 20, 2009

Too Big For Words

Grey's Benefit In Pictures

We used decorations I had bought for Grey's 1st birthday. Can't take credit for the blocks though. Look, they spell Grey.

My dad and Sandy.

My brother Paul, his daughter Daniela, and my son Seth.

Our photographer, Stacy Sellers, and Misti in front of letters from state officials.


Hillary and Pat getting ready for the silent auction.


Melinda and Kim stuck in the kitchen.


A full house. It was amazing!


My mom, Paul, and his wife Jona.

They still smell like chicken! Richard, Kyle, and Dennis cooked all day.

Bill with his high school government teacher. An amazing CHMS student sings.

Sunday, January 18, 2009

Strength

Hear I stand
Arms open wide
I held you close
Kept you safe
'Til you could fly - Michael W. Smith

I miss him so much.

This picture is amazing, but the story behind it is even more incredible.

A complete stranger, named Stacy Sellers, offered to take our pictures when she found out through a friend that Grey was sick. At the time we did not yet know Grey was terminal, just sick. We were expecting a call from his neurologist the day before the shoot was scheduled . I must have called Bill 10 times that day to check in. He kept telling me the doctor hadn't called yet. Eventually Bill stopped answering the phone and I was convinced that he had fallen asleep since he had worked the night before. When I got home, Bill said he had fallen asleep. He had missed the doctor's call, tried to call him back, but was told he had left for the holiday. I was FURIOUS! We had been waiting for a diagnosis, had missed it, and would have to wait until after the Thanksgiving holiday for some answers.

I stewed all night, but by morning was excited about getting our pictures taken. The talent of Stacy was incredible. The boys' behavior, exceptional. We were all even having good hair days, and we matched. Grey warmed up to the camera right away. It was an amazing day, until that afternoon.

Bill's phone rang. As I picked it up to toss it to him I noticed that it was his neurologist. Bill took the call but walked out of the room to talk, not noticing that I knew who it was. As he finished the call and returned back into the room, I asked him who it was. He said it wasn't important, just work. I told him that I saw it was the doctor and he said they just needed to set up a final test. I pried, concerned as to why he wasn't wanting me to know it was the doctor in the first place.

I watched as tears streamed down his face. He had received the call from his neurologist yesterday, confirming a terminal leukodystrophy. The call on this day was to set up a final appointment. Grey was terminal, and Bill had known for the last 24 hours.

Bill knew that if I knew, I would have never been able to take those photos. And I wouldn't have. But Bill smiled through all those pictures. He gave Grey kisses. He undressed him as Stacy put wings on his back to pose him as an angel. And now I know where Grey got his strength . . . from his daddy.

To Bill and Stacy - You have given me so much more than pictures. Even in his absence, you have given me Grey.

Grey Again In The Herald

The following link is from this Sunday's Herald-Zeitung:


http://herald-zeitung.com/story.lasso?ewcd=e058b32c5eb6e1ad



However, I must give credit where credit is due. None of this would have been possible if not for my Church Hill Middle School family. I see Grey's spirit in all of you. I hope you all know that my love for you is simply a mere reflection of your love for Grey. That's how much I love you . I wish I could put it better into words, but I don't know how.

Saturday, January 17, 2009

Grey's Benefit

Unbelievable!

It's late, and there are many people to thank. But I need a little time . . . time to process, time to be still, time to just cry and let loose of all this emotion inside of me, time to figure out what I do next. Although my heart aches for Grey, it continues to beat because of all of you. You guys keep me balanced. I could not love you guys any more than I do at this moment. But I know, tomorrow I'll love you guys even more.

Thursday, January 15, 2009

Grey In The News

Below is the link to the article about Grey in the New Braunfels Herald-Zeitung.

http://herald-zeitung.com/story.lasso?ewcd=0ae3214ba81cfb10&-session=HeraldZeitung:0CB54B6202cf529C26hMp2A07877


WOAI did an incredible story on Grey. To say thank you would not be enough. Below is the link to their story. Once at the story, there is also a video link.

http://www.woai.com/content/news/newslinks/story/N-B-Boy-Killed-by-Rare-Disease/demKDu1eXUCs_siqln5nQQ.cspx


I can't help but feel that we are on our way towards making a difference.

Wednesday, January 14, 2009

All You Need Is . . .

Hey Grey Grey,

Huge . . . your smile, your eyes, your heart, your personality, your loss, and now your story.

Tomorrow night your dad and I will be on TV, NBC. My dear (crazy) friend at work emailed a TV station and they responded. Before I knew it they were scheduled to come out to our house. By tomorrow evening, people in our area will have a face and a name to put with Krabbes, and it will be yours.

I long to make you proud of me Greyson. I only hope I can make you as proud of me as I am of you.

This video is the essence of you. I always knew you'd change my whole world. I am a better person for loving you.

Love,
Forever Your Mom


Before you start the video, scroll down and pause my playlist so that you can hear the video :)

Dave Matthews Band - Everyday

video

Tuesday, January 13, 2009

Your Love

Dearest Grey,

I hear people's love for you in their voice as they mention your name. I see it in their smile as they tell me a fond memory and in their tears as they cry. Even in your absence you continue to touch people.

I'm stuck somewhere between pride and heartache, too numb to feel either. At times I'm afraid to let myself feel anything at all.

The Herald came out to the house this evening, to write a story about you. As angry as I am that you even have a story to tell, I'll keep telling it. I need this to be huge Grey. I need you to make a difference. Only then will your loss be livable.

Love,
Forever Your Mom

Monday, January 12, 2009

One Month


Dearest Grey,


Today you have been gone a month, but it seems like forever. I long to run my fingers through your crazy hair, hear your laugh, and receive your wet, open-mouth kisses. The day will come Baby, I know. But never soon enough.

Some great things happened today, because of you. Your aunt heard from representatives ready and willing to get to work on your bill to expand newborn screening. Jim Kelly's office called needing an address to send something he has donated for your benefit. Those are both huge things.


People at school are hard at work preparing for your benefit. I see you every time I look at them. It's so awesome, their love for you. It helps to keep me going.


I found this video of you when you were about 5 months old, before we started seeing your symptoms. You had just learned how to give raspberries. I watch as you fling your arms and see your chair bounce as you kick your legs. I realize that you are now able to do that again. And as much as I miss you I know we had to let you go. Now go run and play Little Man. We made some good progress today.


Love,

Forever Your Mom

video

Sunday, January 11, 2009

Time On My Hands

I just have all this time on my hands. I guess that's what happens without Grey there to fill them.

Today I have set up a Facebook account (look me up, I have a page and started a group called Grey's Gift), made a big breakfast, cleaned out the refrigerator and scrubbed every shelf, did several loads of laundry, picked up the house, and spent time with Ry jumping on the "jumpoline" as he calls it. That's a lot of stuff, but I know I have to keep busy.

The benefit for Grey is rapidly approaching. I cannot believe all the support coming from every direction. My friends at work who are putting this whole thing together are incredible. My brother and his family are flying in from California. I can't wait to see them. I just need for this to be huge, for Grey. I need it to make a difference for someone. I actually need it to make a difference for a whole lot of someones.

I watched an interview today with Jim Kelly, the founder of Hunter's Hope. If you know anything about Krabbe's Disease, you know that his son died from it. Not only did Jim Kelly get newborn screening for New York mandated, he is now working on getting Universal Newborn Screening for the whole country, state by state, starting with those who test the least. He, his wife, and the foundation are true warriors. They could have stopped with their state, but they didn't.

I need to figure out where to start. I need to figure out who to talk to and how to get them to listen. It just upsets me so, that in America, my son died because some people find it too expensive to screen for every treatable disease. It makes me crazy that President Bush has had a newborn screening bill on his desk since 2006. Too bad he didn't sign it. I'd still have my Grey.

1 in 100,000 babies is affected by Krabbe's. I pray that yours is never that one.

Saturday, January 10, 2009

Heaven


Although I have always believed in Heaven, I don't think I really thought deeply about it for any length of time until I knew my son was a part of it. Undoubtedly, one day all my questions will be answered.


But until then I wonder . . .


Did Grey just know who his family was and just love them immediately?

Was he just able to do all the things that his little broken body could not do here on Earth?

Who rocks him to sleep?

Does his room look like his room here?

Does he play with other babies?

Does he carry around his monkey Oatmeal?


I guess my biggest question is . . .


How could Grey be completely happy in Heaven if we are not there with him?


I really have to believe that there has to be some kind of door, and when he misses us, he opens it and there we are. I have to believe that this is much easier on him than it is on us. I have to believe that he doesn't miss us, because he's always around. I just can't see him.


The other night I was sitting here at the computer, typing, crying, letting myself be sad. It was late and the boys were in bed. Then I heard this boinking noise. I turned toward the noise and saw a balloon from Ry's birthday bouncing toward me. The heat had not turned on. There were no cats in sight. In my head I had a vivid picture of Grey, showing me that he can finally throw a ball.


I went to bed no longer sad.


Another gift.

Friday, January 9, 2009

Grey's Gift


Greyson,


You are so loved. And we are so loved, because you are so loved. You truly are our gift, in both your life and your death.


Love,

Forever Your Mom

Thursday, January 8, 2009

It Could Have Been Worse




Grey Grey,




I have spent the majority of the day being either sad or mad. I really try not to be like that very often, but today I guess I just needed to feel those things.




I met a new mom whose daughter is living with Krabbe's. It just hurts my heart to know that others will continue to battle this senseless disorder. I found one site that would lead me to another, and another, and another.




I know it sounds crazy Grey, but the more I looked, the more I realized how lucky we were that Krabbe's took you so quickly and painlessly. We never had to feed you with tubes or provide you with oxygen. You never had seizures. Your "neuro-cry" lasted only for a few hours. At the time I thought that I would never get that sound out of my head, but I have. At one point we thought that you had lost your vision, but then you continued to track us. You always responded to our voices. You laughed at Daddy on Wednesday night after your bath and gave him kisses. You never lost your smile. And on Friday, you simply slipped away.




I guess God was listening. It could have been so much worse.




Miss You Baby,


Forever your mom




Wednesday, January 7, 2009

At Peace


Dearest Grey,


I know that you are at peace. And as the craziness and sadness of your loss tries to engulf me, I remind myself that I too am at peace, because you are finally at peace.


Sweet dreams Little Man. I love you.


Love,

Forever Your Mom

Tuesday, January 6, 2009

Looking For Signs

Grey Grey,

I find myself constantly looking for signs, little gifts you give me to let me know you're around. Last night's sorrow seemed to leak into this morning. I was tired. I was angry. I was sad. I felt broken and empty.

I got to school and took out the list of resolutions I wrote to you and read them again, like I do every morning. Then I made my way up the stairs to 1st period.

And there was your sign, given to me by a co-worker, seemingly your vessel. It was a 5x8 poster of Dave Matthews. It was in her daughter's dorm room and she no longer wanted it since she had graduated. What are the chances of that?! An incredible gift, from an unexpected friend. Another gift.

Love,

Forever Your Mom

Sunday, January 4, 2009

A New Normal


Dearest Grey,


I spent the weekend struggling to find a new normal. With Daddy at work and Luke with John, it left only Seth, Ry, and me to muddle through. I went to the movies Friday night with your aunts. Nana watched the boys. She looks for you in your bouncy chair whenever she walks into the house. She misses you deeply.


Saturday Nana and I took the boys to spend their gift cards and ate at Olive Garden. Seth had a hard time. The last time we were at Olive Garden you were with us. Saturday night the boys decided to spend the night at Nana's. It was the first time I was in the house by myself in forever. I fell asleep with the TV on. It helped my mind to wander less.


I spent the day Sunday cleaning up, doing laundry. I even cleaned the boys' room. You know what a chore that was. It took me all afternoon, but it's clean. At least for a while. Ceci and I planned our DMB trip, Houston May 1st and Dallas May 2nd. We're branching out and inviting two of our good friends, Melinda and Melissa. Everything changes, and change isn't always bad.


Tomorrow we all go back to school. I'm sure no one will look at me without seeing you. It'll be nice to be surrounded by my friends. I'm sure many will want to ask questions, but few will. I think that's what bothers me the most, everyone is afraid they'll say something they shouldn't, something that might upset me. I just need people to realize that I'm OK. I'm broken, but I'm OK. Talking about you helps me to heal.


You will be so missed up at school. It will be hard for people to see Daddy without you in tow. I know you'll be there. I picture you attached to my leg, as I walk the halls. You are a part of that place, just as much as I am.


I did it Baby. I made it through my first weekend. Tomorrow I'll make it through my first day back at school. I'll carry you with me . . . always.


Love,
Mom


Saturday, January 3, 2009

Just Grey


These are a few of the things I loved (and still love) about Grey:


When you held him, he just melted into you.


He would growl at you if he liked you.


He gave high fives.


He called Bill "Ah Da".


When he was excited to see you, his whole body would stiffen up and his eyes and smile would just burst off of his face.


He loved when I would sing "Baby" to him, even though I can't sing.


His laugh was amazing.


Whenever he saw a camera, especially the red light that flashed before the picture was taken, he would become a huge ham.


He gave the best kisses ever.


He loved oatmeal, both his monkey and the breakfast food.


He smiled at anyone and everyone.


He always smelled like syrup.


He loves to wrestle and play rough.


He laughed at anything.


He listened to DMB with me all the time, without fussing.


He loved his bath. If it was past 7 and he hadn't had one yet, he'd let you know.


He would snort when he laughed, just like me.


He had CRAZY hair.

Friday, January 2, 2009

Time Is Relative


It feels like years.

Today you've been gone 3 weeks. I can still smell the Morphine on your breathe. I can see your lips colored orange by the Gatorade. I can feel your hair through my fingertips.

But it feels like years.

I love you Grey Grey.

Thursday, January 1, 2009

My Resolutions


Grey,


I promise to never darken your spirit with my sorrow.


I promise to make you as proud of me as I am of you.


I promise to focus on the time I had with you, not the time I'll have without you.


I promise to share your story with everyone I know.


I promise to not turn our house into your shrine.


I promise to do things for me, as though you were here and healthy.


I promise to treat your brothers as I treated you.


I promise to allow your loss to make our family stronger instead of breaking us down.


I promise to live each day as though there is no tomorrow.


I promise to remember what is really important.


I promise to see you every time I look into your daddy's eyes and not be sad.


Happy New Years Baby.


Love,

Forever Your Mom