Monday, August 13, 2012

Healing a Hurting Marriage: Part 2. Her Story

(If you missed yesterday's post, Healing a Hurting Marriage: Part 1.The Backstory, please read that first to get the context of this post - Amy's celebratory post.)

My life has changed so much in the past 3 years. Well, since we lost the baby before Bodie, actually. But I’m so proud of our family for making it through.

I’m proud of myself. I have PTSD, a lot of it, actually. One of my fellow heart moms says it’s not “Post Traumatic Stress Disorder” with us, but rather “Persistent Traumatic Stress Disorder.” She’s totally right. I mean, you don’t witness your child almost die in front of your eyes 3 separate times and actually see another child in the room next to you die without it affecting your psyche, not to mention the scores of children I’ve seen lose this battle who I only knew tangentially. But it doesn’t show up like you’d expect. I don’t wake from my sleep in nightmares or have flashbacks. But it shows up with mad OCD. As in, every square inch of the kitchen counter must be clean every night before I go to bed…even if the cleaner is coming the next morning (yes, I’m serious). And I once laid into my mom for folding the laundry incorrectly (I actually unfolded and refolded every single piece of it when she was done - true story). I know why I did it – obviously, there is so little in this journey that I HAVE had control over that I have to take it where I can.  And I’m an emotional eater big time. So I guess I’m most proud that I’m not 800 pounds and huddled in a corner somewhere, with my PTSD taking over. Because I totally could be. But instead, I’m still clinging to my faith, and getting my kids fed and the house more or less clean on a regular basis, and laundry done and kids to school and various programs.  I guess I’m most proud of the normalcy I’ve been able to bring to my life in the face of everything we’ve been through. Oh, and the whole joining with my fellow heart moms to start a nonprofit to give back to newly diagnosed HLHS families. Talk about making lemons from lemonade.

I’m proud of Dusk. This journey has been especially hard on him because (I may have mentioned this) I am a control freak. I like things done MY.WAY. Oh, and I’m not very good at asking for help. I would prefer that he read my mind and step in and do it exactly the way I would have. And if he doesn’t somehow read my mind or, God forbid, does it the wrong way, I like to play the martyr role. I play it well. So I have not been an easy person to be on this journey with. I have pulled myself into this taking care of a sick child role 100,000% and only let him come along for some of the ride.  Oh, and he’s not always the most, shall we say, observant, when it comes to realizing that I need help. Are you sensing why this dynamic doesn’t always work? It’s a VERY challenging dynamic that can lead to a lot of resentment on both sides when you’re talking about a child in the hospital for 5 months straight. But you know what? He keeps trying. He’s STILL here, alongside me, trying to offer help the best way he can. I suppose some might call him a glutton for punishment – I just call him my amazing, God-loving husband. He loves his family and his commitment to us is breathtaking. Since he’s not a hospital guy, while I was at the hospital, he picked up the single-parent role with Sierra. I mean, I got to come home and eat dinner with her most days, but he did the nitty-gritty day to day trying to keep her together stuff. It wasn’t easy, but he did it, with an immense amount of love and compassion for her and how hard the experience was for her.  I truly believe a large part of why she made it through this as well as she has is because of how he parented her.

Which brings me to Sierra. Oh, our sweet Sierra. I am SO proud of her. Her entire world got turned upside down and she just powered through. Sure we had our temper tantrums, but I don’t know how much of that would have been there anyway simply as standard toddler stuff. But she has come through on the other side, a super compassionate and empathetic girl.  Anytime Bodie has a medical issue, she wants to know what’s going on and provide her input into how she thinks we can fix it (ok, this trait gets more than a little annoying, but it’s really sweet and comes from such a place of love and concern). She is well-adjusted, thriving, loves Jesus and loves her friends and family. She has such a zest for life and her excitement is contagious. It is stunning that she is so well-adjusted considering everything she went through the first year of Bodie’s life.

I am proud of our entire family unit. 2 and ½ years after a devastating diagnosis, the birth of a medically fragile child, 5 months of being split up between hospital and home, 3 open-heart surgeries, 2 pacemaker placements, 2 cardiac catheterizations, leaving our church home of over 8 years and church shopping for another year, and a whole lot of other crazy stuff later, and we’re still here.  We’re slowly getting plugged into a new church, we’re working through the aftermath of the crazy stuff, we’re developing family rules, we’re still all in one piece (more or less) and WE STILL LOVE JESUS AND EACH OTHER.  How’s that for a celebration?

Editor's Note: Anyone who has read "The Five Love Languages" or a similar book will get a kick out of the vast difference between HER perspective and what SHE celebrates vs. HIS perspective and what HE celebrates (coming tomorrow!). Just doing this exercise was a total eye opener for us and really started some great discussions for us!


  1. Another great post Amy. I can't wait to read the rest of them. Thank you again for being so open and honest!

  2. Awesome post. Sure enjoy reading both your & Dusk's thoughts. You guys (including Bodie & Sierra) have been a great encouragement to me.

    God bless,

    George Landes

  3. Great post. I really related and I appreciate how well you put it all into words. My daughter just received her 4th diagnosis (HLHS, Epilepsy, Exotropia, and now Scoliosis) and the stress is really showing through right now.