Tuesday, July 20, 2010

Life on the edge

Bodie & Isaac (and Cindy and I), April 2010

I always thought of myself as a fairly empathetic person...then I became a mom, and realized I had no idea how deep my empathy for another human being could run...and then I became a mom to a child with a congenital heart defect...and realized that I had only scratched the surface.

Being a heart mom requires you to literally live life on the edge. Every single day you are reminded of your child's fragility, of your child's mortality, that there are no guarantees with your child. The bubble the rest of the world gets to live in? Not so much for heart moms. We don't get to blissfully dream of our children growing up, graduating from high school and college, getting married and giving us grandchildren. We get to hope, yes, we get to have beautiful, wonderful HOPE, but the hope is always mixed with fear. Because we are daily confronted with the fact that each day with our special heroes is a gift, a gift that we can never take for granted.

The upside to living life on the edge? We get the privilege of living life in the here and now, with a beautiful clarity. We can get mired in the details of life, but only for so long before our little miracles remind us of what's really important. As a close friend so eloquently put it, there is this intensity to life that exists all the time for heart moms. And it's an amazing way to go through life.

Now for the empathy part. Having a heart child gives you a whole new realm of understanding and sympathy for others going through similar situations. The heart community is a really tight knit community; something about going through traumatic experiences, I suppose - probably a bit like soldiers who've battled together. And we rejoice in one another's successes (when children are finally gaining weight, meeting milestones - what the rest of the world considers "normal" stuff is anything but for our special kids). And when the unthinkable happens, another child takes a turn for the worse, or finally loses a hard fought battle with a chd, it literally takes your breath away. You feel as though you have been sucker punched to the gut as well. Because in your deepest soul, you know that your child is a heartbeat away (or, in Bodie's case, a tiny 5mm piece of gortex away) from the same thing happening. So, when you hear of a chd kid having a rough time, you hurt for the child, who you've come to love so much, you hurt for the parents, who you've become so close to, and you hurt for yourself and for your child and what each chd tragedy means for your child. And...you live a little closer to the edge than the day before...

Tonight, I dedicate this post, and my empathy, to sweet baby Isaac and his parents Cindy, who I honestly love like a sister, and Jeff, her amazing husband. They have faced some pretty unbelievable things the past few days and have ultimately decided to lay their child's life in God's hands. They are asking the doctors at Cottage Hospital to do what they can for baby Isaac, but they have opted not to do ECMO if it comes to that. If it ends up being Isaac's time to go to be with Jesus, then they will let him go. They have such a powerful story and are such an inspiration to all who have been fortunate to come into contact with them. You can check out Isaac's story at http://www.caringbridge.org/visit/isaachoyos. Please join us in praying for a miracle for Baby Isaac tonight.

Thank you,


  1. Your post is so very well said!

    Isaac, I am praying for you little buddy. Miracles happen every day!

  2. I'm right with you praying for Issac, Cindy and Jeff. Love and hugs!

  3. Amy: Your writing is so powerful, you made me cry this morning. I hope you'll continue to write when Bodie is well and home. I will be praying for both families.

  4. Praying for healing and God's will for Isaac, Cindy, and Jeff... Praying for my Bodie to get well... and Amy, you are a unique woman, a role model. Much love: Nairi

  5. What a beautiful post. Lots of prayers to Isaac's family. Rest in peace Isaac, you fought a good fight.