To the Parents Battling a Chronic Illness While Fiercely Loving Their Children

Let’s face it: being a parent is hard. Kids don’t come with instructions, and everyone seems to have opinions about how you’re raising them. While I’m sure some people take to parenting like a fish to water, I know there are folks out there like me, whose journey is a bit more complicated by chronic illness.

I was diagnosed with reflex sympathetic dystrophy/complex regional pain syndrome RSD/CRPS on Christmas Eve in 2007. Soon after came diagnoses of dysautonomia, occipital neuralgia, fibromyalgia and colitis. Just when I thought I had enough, the medical stuff would continue to pile on. I had been a healthy, active dancer and gymnast for most of my life — how was this all happening to me now?

My husband and I had been married for just over a year at that point and were hoping to start a family. We ran into several fertility issues along the way due to my condition, and several fertility specialists even told me that it may just not be meant for me. For seven years we went through treatments, tears and monthly heartbreak until finally, those two beautiful pink lines showed up. I didn’t believe them at first, and it took five home pregnancy tests and a trip to my reproductive endocrinologist to finally convince me that this was going to happen.

Being a mom is what I had wanted and worked for during those long years. I was overjoyed, but I was more worried than I think I ever let on to everyone around me. I struggled so much with horrendous pain – how would I hold my daughter? Would I be able to bend down to put her into a swing? Would I be able to chase her around the house when she became mobile? What would the
birthing process do to my condition?

It’s been five years and just like every parent, we make it work. There are hard days; there are more than I’d care to admit. There are times when it feels like my daughter has to give up her play time or fun because I just can’t physically do what she wants me to do. Those moments chip away at my already guilty heart each time. I’ve waited for this amazing kid, she’s more than I could’ve imagined and I constantly feel like I’m not good enough for her. She deserves a mom who can run through the backyard. She deserves a mom who can carry her inside when she gets sleepy. She deserves a mom who can do goofy dances along with her. Sometimes, on a good day, I get to be that mom. But most of the time, my spoons are spent on just trying to get through the work day, make dinner and get everything ready for the next day before they run out.

My husband is an amazing partner, father and caretaker. He didn’t ask for the latter, but he does it with love, acceptance and humor. Our daughter is lucky to have him, and I know I am too. He allows me to complain. He holds me while I cry. But he also encourages me to stop and look at the amazing kid we’re raising. He reminds me of all the things I am able to do and how intensely loving our daughter doesn’t require me to run a half marathon or lift weights. It’s the way we talk about her day each night at dinner. It’s cuddling up before bed to read her favorite stories. It’s supporting her when she has big questions about life, death and everything in between.

So, to the parents out there who love their children so fiercely and are battling their own health at the same time: I see you. I understand what it does to your heart. I see your frustration, your guilt, your sadness because I’m there too. But I hope you remember that you’re also showing such amazing strength. You’re getting up each morning and providing love and support to the child who will grow up to be your loudest cheerleader. You’re strong. You’re worth the fight. And you’re trying – that’s all anyone can ask for.