Tuesday, March 26, 2013

Making normal out of the abnormal

Bodie had a pulmonology appointment at CHLA today. As we were waiting in line to get our visitor badges, I heard someone call my name. I turned around to see a woman vaguely familiar, with her husband and young son next to her and her infant in the Ergo carrier on her back. It took me a minute to place her as my former hairstylist Lyndsay (I say "former" because she did my hair for a couple of years before going on maternity leave with her second child and never coming back, despite my repeat harassing calls to the hair salon to make her come back, puhlease!!!)

She told me her 4-year old son (we'll call him "P"), had been diagnosed with ulcerative colitis and had had 3 surgeries (the last just 2 weeks ago) and a colostomy bag for some time. She hadn't been able to come back to work because she'd been focused on caring for him. 

I looked at this sweet little kid, so full of life, and then back at Lyndsay and I saw it. I saw the look in her eyes. The determination in a mother's eyes when she has had to fight repeatedly to keep her child alive, to make her child's life better. That determination marred by utter exhaustion, the added weight on her shoulders because she has witnessed unspeakable things in her child's journey, things no parent ever dreams of happening to their child when they think of starting a family. The joy in her smile that they were just back for "a quick appointment." And I totally got it. 

I thought of the times I had sat in her chair, talking about Bodie and what he had been through. I thought of her responding, as most do, that "I couldn't imagine going through that." Sometime, in the last year, the tables had been turned. In the blink of an eye, she, too, became the mother of a medically fragile child. She had joined the club no one wants to be a part of. I was sad for the loss of normalcy she's faced. But so happy to see how well P is doing and how, like so many other moms who have traveled this path before her, she was making it fun for P, making life as "normal" as possible despite some pretty abnormal circumstances.

After Bodie's appointment, we swung through cardiology and sat with a family I had literally met over email hours before, as they awaited news of their son's Glenn surgery. We watched Bodie run around like a madman, chatting and laughing as though it's totally normal for parents to be sitting in a waiting room while their child undergoes open-heart surgery 2 floors below. 

But this, this "making normal out of the abnormal" is what we parents of medically fragile children do. This is our mission. We might be forever changed, forever assaulted by this experience of endless doctor's appointments, worries, fears, tests and hospitalizations. But, that doesn't mean our kids have to be.

This morning, as Bodie and I sat for 2 hours waiting for what amounted to a 15 minute appointment with a fellow who didn't even know what HLHS was (but who, super helpfully, knew the practice saw a lot of HLHSers), I poured my body into making it fun for my son. Because, at the end of the day, his body might be medically fragile, but his spirit isn't.
Today, I lift my hats (yes, all of them - God knows I wear a lot of 'em) off to all my fellow moms in the trenches with me. Moms laughing their way through doctor's appointments, distracting kids during vital checks, comforting sad souls, kissing booboos and holding it all together so that a trip to the hospital is just another fun day for their special kiddos. I would say "I don't know how you do it." But you don't want to hear that. You do it because that's what good parents do. So I'll just say "You rock. Your kid will thank you for it. Someday." 


  1. Tears in this mama's eyes this morning reading this. Love you dear friend and for always knowing exactly what to say to make all of us feel "normal" when our lives are anything but. {{{HUG}}} Great blog post!

  2. Love this! We adopted a little boy with HLHS and I'm still learning how to live this life. Since we got him after his first two surgeries and he's doing so well, I swing the other way of acting a little too normal and forgetting about his special heart. He can't do all the things our daughter can and when he's sick I can't treat him like we do her. It's such a balancing act between taking special care of him and wanting him to know he can do so much.

  3. Yes, beautifully written. Another heart mom tips her hat's back to you in sharing this journey.