Here’s a blog post from a friend and a Heart Mom that you need to read:
Last night as I watched Mary Clare zoom by me in her mini airplane laughing so hard tears were streaming, I couldn’t help but think of what is ahead of us. The mother in me prayed a silent prayer and pleaded to God that this will somehow make it up to her. Maybe if she has the most fun summer, she’ll not hate me for what I know must be done to her. I’ve noticed Mel has also been thinking this way. He has promised to paint her toenails everyday while in the hospital this fall. He told her she could pick out 40 different colors, or however many days we are there, so they can be a different color everyday. He also promised her a trip to Disney World to see all of her beloved Princesses afterward.
How can I do this again? How can she do this again? Yet again. How am I going to be able to hand her over this time, not just for a heart cath, a simple procedure by comparison, but a surgery which rips her tiny body apart? How am I going to be able to watch her on a vent again? Lines, leads, monitors. All over again. Having her torn away from me at birth and sit by and watch all that she went through, then again to have the same thing happen merely 6 months later was horrific. She has to do it all over again, but this time she will ask. Why is this happening? Why can’t we go home? Why do I hurt? Why can’t you put a band-aid on it? These are the questions which haunt my dreams.
Wow. What a burden to carry around. How could anyone make the decision to send another person – especially a child – to heart surgery? And especially their child?
This Heart Mom obviously knows the answer to those questions: To save her life. To give her the best chance to have a reasonably normal existence. And to perhaps one day, tell her own children that her mom stood up for her when she was a child; tell how Grandma and Grandpa never gave up on her. Even when it looked like their lives were heading right over the edge of the cliff, they dug their nails in and they hung on.
Because that’s what Heart Parents do. They ask one more question. They explore one more option. They go one more mile.
And please keep this young family in your thoughts. Drop by their blog and wish them the best!
Tags: CHD, Congenital Heart Defect, Congenital Heart Disease, HLHS, Hypoplastic Left Heart Syndrome
Adventures of a Funky Heart! 
June 23, 2010 at 2:29 pm |
this made me cry. this is the exact future that we are looking at.
Joshua is safely tucked inside me right now. Looking at his beautiful face on the ultrasound I just begged God to take this from him. Begged Him to give it to me instead. I teared up as the hopital liasion told us again that we would not be able to hold sweet joshua after he is born. No bonding, no snuggles, no nursing. Just instant IV’s and possibly a vent. Thrown into a world of pain, machines, leads, monitors, not the physical contact that a newborn should have. The thought makes me sick. But there is no other option.
Thanks for posting this. We will be praying.
June 23, 2010 at 9:37 pm |
I am reading this as our Prime minister is giving a press conference about standing down, and still, teary-eyed can talk about having a piece of someone inside him, about organ donation….what a life changing event. This man has even now time to be greatful for someone else’s ultimate gift.
June 24, 2010 at 9:09 am |
I read this when Kerri initially posted it and still, reading it again I sit here with tears in my eyes. We know exactly how she feels and we are also a heart family that knows this day will be coming. Thanks for posting this! Also, I linked to your post from yesterday and asked other heart moms for their experiences.. I got some interesting responses.. if you’re interested 🙂