Telling Shane's Story on the Annivesary of His Death

17 years ago you earned your wings, Shane.   It's been at least 10 years since I sat down and told your whole story.   I don't know why.  Maybe because it's my job to represent 6000 children born with CDH.  Maybe because it drives me nuts to see people work so hard to elevate one patient's name when so many others are sick and dying too.   Maybe because I was raising you to be kind and humble and I never wanted the charity to be about you.  Or maybe it was simply because it's painful to share so much and I just wanted to keep you to myself.

But more than half of the families at CHERUBS have never heard your story.  Many of the new generation don't see me as a grieving CDH mom too.   Your name and photo is rarely included on awareness projects when they list all their CDH friends' children.  I'm just here to provide a service, run the charity, give free stuff.... to some.  Not everyone thinks that way.   Some remember.  But this problem has gotten worse the past 2 years.  This generation is not like the one that was here when we started, when everyone just wanted to help everyone and no put their child first and there was no social media or cliques or drama.  The cause came first.  Saving babies came first.

So many have asked about you lately though... and I admit, the mom side, the human side of me... it hurts when you are forgotten.  Above all, I am your mommy.   You matter too.   You lived.  You fought CDH.  Your memory lives on.

So on your angelversary, I decided to do a live Facebook video and share your story.  I had no intention of crying, but then I wear my heart on my sleeve.  It is raw, it is true, is our story.  


I love you and miss you my son, forever. 

 

Congenital Diaphragmatic Hernia Awareness Month

This photo was taken in 2008. On the 8th anniversary of my son's death. It may look like a strange children's party at the cemetery, but sending balloons to Heaven is all a grieving parent has sometimes.

I'm posting this for Congenital Diaphragmatic Hernia Awareness Month

I don't have school photos or a graduation photo. I don't make posts about my son not picking up his dirty socks off the floor or playing his music too loud. I've never posted a photo of his first baseball game. I've never had such a photo. I will never have such a photo. You won't see me complaining about having a lazy 23-yr-old who won't finish his college classes or get a job. I wish I could have him here to complain about. I even wish I could still complain about how hard it was to have a sick child or spend nights in the hospital. I'd give anything to have to wake up at 2:00 am for a broken feeding pump or to change a diaper. I'd love to stress about another IEP meeting or spend hours a week in physical therapy, occupational therapy, speech therapy and sight therapy. I miss fighting with the insurance company. I'd love to pinch every penny to afford diapers and gas to the hospital because my ex was out of work half the month because Shane was very sick in the hospital. I'd give my life to hear him cry or squeal or play a musical toy for the 10000th time and grate on my last nerve because I'm emotionally and physically exhausted. I can still sing every song put out by Sesame Street from 1993 to 1999. I wish I was tripping on Shane's toys in the floor. I'd love to have his surgeon on speed dial still. I'd even love to have back the guilt that I felt when I complained about all the issues of having a medically fragile child when I knew so many who didn't have their children. That guilt was easier than this. Anything, anything but this. How little did I know then how much I'd miss that life when all I did was complain about how hard it was even though I knew I was blessed. There was no way to comprehend how much I'd miss it. How much I'd miss him. After all these years, I still miss him and need him like I need air to breathe. 

 

All I have are visits to the cemetery. I have just memories of worry and pain and hardship and watching my child struggle his whole life. I don't have my child. CDH did that. 50% of families only have memories. 1000's of families just like mine.

Learn more about CDH at http://www.cherubs.org