A letter...

Dear Corbin,

I miss you. I hope it's warm where you are; I know you used to get cold in the hospital. I hope my grandma, though I never met her myself, is holding you right now. Please tell her I'm sorry she had to meet you this way.

I'm sorry you had to die so young. I had so many plans and dreams for you. I know that sounds selfish but I couldn't wait to bring you home and start our life together. When we heard you had heart problems I was devastated. It's not a feeling many people can relate to. The feeling you have when your dreams for your child are blown away. We were told with your heart problems you could never play football. That made us sad. Sad because we didn't want to tell you that you couldn't do it; we didn't want to tell you that you couldn't do anything. Our heart broke for you and the things that you were now limited to. We worried that you would feel left out from your brother and the things he could do. We worried that you might hurt yourself trying to mimick your brother.
Then when the Williams Syndrome diagnosis became real, we had new worries. We worried about your medical problems, the therapy you would need, the looks you would get, and the questions. So many questions.

It's hard to explain that feeling. That moment when you are standing over your child, waiting to help change his blanket and the doctor walks in. He's not the surgeon or even the head cardiologist. He asks if we have talked to the geneticist yet. I say no. He says "Oh, well he does have Williams Syndrome."

......."He does?"

That moment, right there, where you brain is processing what the doctor just said. In that split second there are millions of neurons firing, connecting, pulsing and sparking...only to get nowhere. I'm speechless. I don't know what to think or feel. You don't yet know the enormity of those words. You don't yet know how that one sentence will change your life forever.
Williams Syndrome.

One of my first thoughts was that it was my fault. "Oh God, what did I do?!" My mind races back through the past year, thinking of anything that could have affected my pregnancy. The birth control? The sleeping pills? The one half of a beer I had on July 4th? No, no, and no. They tell me it was nothing I did.
Which makes me feel better for a second, but the guilt crashes back. It's genetic, they tell me. Oh great, so it was my fault. It would have happened no matter what. It was in my genes; I passed it along.

And I'm sorry for that. I'm sorry this disease hit you so hard. After we learned more about Williams Syndrome (WS), we found a small but very strong and supportive group of mothers. They were able to give us more information and stories of their WS kids. It didn't seem so bad then. We could do this. It wouldn't be easy but you could thrive. You would need therapy and medications and maybe glasses. You might have eating problems, sensory issues, and it will take you longer to reach your milestones. You would always be on the small side, you would most likely have reflux, but you could live. You would also have a giant personality. You would be so friendly, and have an affinity for music. You would never meet a stranger and your blue eyes would have a starburst pattern. These we knew. And we accepted. We changed our mentality and our expectations to suit your new life. And we moved on.

There is no other option. We did what we had to do. If this is what is meant to happen, then we were ready.

Then you got worse.

Overnight, you crashed. You were doing so well, eating and breathing with low oxygen support. I was able to hold you, bathe you, and change your diaper. But that all changed. Your numbers bottomed. You had to be intubated. That awful vent down your throat to help you breath. I prayed that it didn't paralyze your vocal cords. Which now I remember, it may have. You never cried the same again. You were taken off formula and put on TPN. You were back on ICU status.

We were back to square one. But I still had hope. I still was optimistic that you could get past this. This was just a step back. They warned us this would happen, that we would take a few steps back but we would slowly make our way forward again.

Those steps forward never happened. You very, ever so slowly, began to look better but you were still on the vent and TPN. The TPN started to effect your liver. You started to get jaundice at three months old. Your hair fell out. Oh God. Your hair. It was so soft. I loved to brush it up into a mohawk. The nurses thought you looked so cute that way. Then it began to come out in clumps. The first time I noticed, my heart stopped. I was terrified. I didn't know what it meant. I had to concentrate on breathing while I looked for the nurse. I tried so hard not to cry. To me it meant you were getting worse. Although you looked better, your insides were getting worse.

I wish we would have waited. Just a couple more days. I regret that more then anything. I wish we would have put off your surgery just two more days so I could have spent more time with you. You were so beautiful. A chunky ten pounds, pink skin, and you were following us with your eyes. Oh baby...I'm so sorry. I second guess myself. Was the surgery THAT necessary? Did we really have to do it RIGHT then?

Who knows. I know why we did it that day. It was because you looked so much better. We didn't want to wait too long and you get worse. We wanted to do the surgery while we thought you could still handle it.

And you did. For a day, you handled it. I was told the first 48 hours would be the hardest. And you made it through the first night! I was so proud. I told the doctors I wasn't worried. He's gonna pull through. He's my fighter, my lion. I held your hand, smiling at you. I love you so much. Don't leave me.

But you did. It was too much and your heart stopped. I think about that day all. the. time. Was there someone in your room when your soul left your body? I'm sorry I wasn't there. I'm so sorry. The guilt is huge. Why wasn't I there!?!? Why couldn't I have gotten up a half hour earlier? Why did we take so long to get out of bed? I'm so sorry. God, I'm so sorry.

I wanted to tell them to stop. I knew you were gone. Your body was there, but you weren't. But I didn't want to be the one who said "stop." I didn't want that. So we told them to keep trying. It didn't hurt you. You weren't there anymore, you were in Heaven. You had already gotten your wings by the time we arrived at your room. If I had known that night was the last......I'm so sorry. I...can't explain the pain I feel from the regret.

They told me to hold your hand. To say goodbye. But you weren't there. I touched your hand, but it was so cold. So cold. I just cried and shook my head. No. No. No.

I'm so sorry.

Forgive me. Baby please forgive me. I love you so much and I'm so sorry. I'm so sorry....

Help save a life

Have you ever given blood?

I haven't.

I think it's about time I did. When you see the signs for blood drives, do you ever think where that blood goes? See here to find out. I know Corbin received 5-6 blood transfusions while he was in the hospital. They have a blood bank where they keep the blood and if that bank is empty...well thats that. There is no more. They cannot "make" blood, it has to be given by a volunteer.

A blood transfusion can save a babies life. And all you have to do is donate. Here is the story of a baby with cancer that needed over 50 transfusions. Without those transfusions, she would not have survived. Here is the story of a man whose rare blood has saved over 2 million babies! And here, and here, and here! There are dozens of stories.

If you would like to make a difference and help save lives, it only takes a little bit of your time, visit http://www.redcross.org/donate/give/ to find out more. You can search for a local blood donation center in your area, set up a blood drive, or set up an appointment to donate.

Here is a link where you can learn the different types of blood and who can donate to who. I personally, have 0 negative blood and I can donate to anyone. However, I can only receive 0 blood.

Your body can restore what blood you donate, something a machine can never do. What an amazing thing!


I just posted this on my other blog but I have more followers on here! Here is the link to our interview about Pulse Ox and heart defects. I, Michelle, and Kathy are working our hardest to make Pulse Ox screening mandatory in West Virginia. Check it out, share, and help share awareness!


You can help!

Support Team Jacob and the American Heart Association by donoting or joining the cause and walking! The cause is to raise money to help fight heart disease and strokes by encouraging a healthy lifestyle. Even if you can only donate $1 or $5, it brings us closer to our goal.

Click here to donate and here to learn more. Thanks!

New fear

Ever since Peanut passed away, I've gotten more protective of Colt (16 months). Not bubble-boy protective, just more aware, more concerned, and hovering a little closer. I understand he is a boy and he's going to fall, get dirty, and put questionable things in his mouth. I am just painfully aware how precious he is. (which he always has been of course)
I know I have no reason to worry. But every single morning, if I wake up before Colt, I get scared. Heart pumping, thoughts racing, kind of scared. Colt has always been a good sleeper but now I imagine the worst.
"It's so quiet because he's not breathing."
"He fell out of his crib and broke his neck."
"He's dead because *insert horrible, far stretched scenario*."
The other morning as I walked down the hall to his room, still quiet, I was praying "please be okay, please be okay." He was, of course, okay. He heard the floor creak and started whining. But I was honest-to-God scared something was wrong.

I have always checked on him if he slept longer then usual, but now I'm terrified I'll walk in and find him not breathing.
And I don't think I'll ever stop worrying.

Don't ask

It's getting harder. I think when all "this" happened, I was in total shock. Now it has sunk in more: my child is gone.
It's hard for me to read about other children's surgeries. There was one where the mom was asking for prayers for her son's heart surgery. I couldn't say anything to her. I was just thinking "Good luck, that's the surgery Corbin had before he died". I can't say that to another mother! I can't be optimistic for other people, I just can't. I've been there and seen what can happen. Not all babies survive heart surgery and I'm not going to pretend they will.

Yesterday was bad. I think the interview brought up memories I try to avoid. I was also working on writing a condensed version of Corbin's Story for a book a friend is writing. It wasn't pretty. I was trying to type while bawling my eyes out. I was getting depressed which turned into anger. I was just in a mad bood all day; ignoring phone calls and texts. I just didn't want to be around anyone.

We don't even say his name. It's like if we say his name, then it all really happened. But if we don't, then it wasn't real. It never happened. He's just sleeping and we'll get to see him when he wakes up. I hate that I can't say his name.

I had a moment that terrified me yesterday. An old friend from middle school messaged me and asked how "my second child was doing." My heart started racing and my hands started shaking. "She doesn't know!?!? Oh my God, what do I say?!"
I didn't answer her. I couldn't. In my depressed and angry state I would have just told her "He died" then logged off. Let her chew on that. I'm not trying to be mean, I just don't have the "togetherness" to calmly sit there and tell his story all over again.
So I messaged her the link to my blog and left it at that.
She never messaged me back.
And I don't care. I don't want to talk about it. I don't mind if someone knows the story already, but I do NOT want to explain the three months of pain and suffering my newborn endured fighting for his life. I'm not going to do it.

I have no patience left. I get so angry seeing people complain about their child "driving them crazy" or that they're up past their bed time and won't calm down. I don't say anything, I just delete them off my page. I don't want to see it. I can't.

Cody came home early yesterday. He said he got really emotional and they sent him home. He just couldn't act like everything was okay, because it's not. We are not okay. I'm sure you are concerned and you are honestly sincere in asking; but DON'T. Please don't ask "So, how are you doing?". Don't ask me that because I'm also tired of lying. I'm not okay.
 So next time you ask, I'm going to say "No, I'm not okay. My child is dead and my heart is broken. What do you suggest I do?"

New address!

For those who have my blog link on their blog page, I just wanted to let you know that the address to Corbin's Story has changed.

It is now: http://thecorbinstory.blogspot.com

Thanks and happy Independence Day! We are having dinner and our own fireworks show, should be fun!

15 minutes of fame

Today a friend and I were interviewed by WVVA news about heart defects and Pulse Ox (read more here ). We were both so nervous and worried that we would forget something important or leave out something crucial in understanding Pulse Ox. Lucky for us, the reporter is a former classmate of mine, which helped ease the pressure level. We chose a casual spot in the park where a playset was dedicated in honor of Corbin.
An hour and a half later, we were done. We had both told our stories; all though very different, are both very touching. The reporter did a great job of pulling out the right questions to make me cry. I don't mind though, hopefully the interview will really hit home with viewers and bring a few more tears.
I'm so happy we were able reach out on such a big level to people. As I told the reporter, I just want people to hear the words "Pulse Ox" and remember that heart defects are a possibility.
1 in 100 kids are born with a heart defects. This isn't a small percentage we are talking about and by mandating Pulse Ox, it can help save lives. I told her if we help save one life, then our work has been sucessful.
If you are in the West Virginia area and you get WVVA news, tune in Tuesday night at 5 to watch our interview!

BIG thanks to Kathy, Michelle, and Kristine for all their hard work on Pulse Ox, and especially Rachel for interviewing us!