You don't know how it feels...

Thursday Jun 24, 2010

You don't know how it feels...

No you don't know how it feels
To be me
-Tom Petty, You Don't Know How It Feels

When Jay was born and we learned that he was going to need heart surgery, we felt very alone. I knew nothing about having a child with a congenital heart defect (CHD), and it seemed a very scary world we were entering. But pretty quickly, I found a number of other heart moms who blogged about their journeys, and it was very comforting to read about children who had been through multiple surgeries, heart caths, feeding issues and all of the other scariness that goes along with CHD. Reading those blogs made coarctation of the aorta seem pretty mild. In the spectrum of heart problems, it's minor ... and while it's still a major heart defect, it's correctable with surgery. After a successful surgery, coarc kids go on to lead a very normal life, save for the occasional yearly cardiology checkup. That's the path we saw him headed down.

While I found great comfort in seeing other heart families' stories, to be honest, I kinda distanced myself from that world. I saw Jay as a former CHD child - one who'd been "fixed." Everyone believed that - even his cardiologist. So this news has made me rethink the way I view my kid, and I know that I'm going to have a new set of worries - forever - because of this additional heart defect.

Yesterday I saw a blog that absolutely, totally, completely summed up how I'm feeling right now:

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.

I read those words with tears streaming down my face because that's exactly how I feel. She nailed it. And while it's awful, it is so reassuring to know that someone else out there really does know how it feels. To be me.

Posted at 09:26PM Jun 24, 2010 by Jen Foster in General | Comments[2]
Comments:

I don't know how it feels, and it still tears me up. I was crying with you (and Mary Clare's mom) as I read this. Lots of love and hugs to you, sweet friend!

Posted by Amy G. on June 24, 2010 at 10:26 PM EDT #

The phrase "heart moms" gave my heart a peculiar twist - I had thought over the weekend of the many ways we throw around the word "heart" - bless his heart, it broke my heart, the queen of hearts, heartfelt congratulations, heart of gold, heart of stone, heart on your sleeve, you are in my heart. A heart is a valentine, a romantic sign at the end of a love note. A heart is what our precious little ones steal with a snuggle, a sly grin, a twinkle of the eye.

A heart is not meant to be broken. A heart is not meant to be "defective" or "needing surgical repair". A heart is meant to be colored in red crayon and proudly stuck to the refrigerator, duly dated and then faded, covered with other artful renderings of hearts, and flowers, and rainbows, and dogs.

Even as we pray - beg - for God to hear the deepest yearnings of our hearts for Jay's complete healing and, yes, for a cure, all of us who love you so deeply hold your own broken heart in ours. We surround you and Derek with love and promise that even in your darkest moments, when being you is lonely, sad and unknown, you are never, not for even a single beat of your own heavy heart, alone.

Posted by Gabby on June 28, 2010 at 05:58 AM EDT #