When my daughter's chronic illness required her to go back on medication, I struggled to keep my calm. The first moment I was alone, I broke down but it was exactly what I needed.

By Leah Campbell
January 23, 2020
Illustration by Kasia Bogdańska

It happened as I was driving away. The tears started pooling in my eyes, and then flowing hard and fast down my cheeks. I couldn't breathe. I could barely see. I had to pull over because of the intensity of my sobs.

This was hours after the news that sent me over the edge. But it was also the first moment I'd had to myself. The first break away from my child I'd been keeping everything together for.

And in that moment, in that break, I broke.

My daughter has an autoimmune condition called juvenile idiopathic arthritis (JIA) that involves her immune system attacking and destroying her joints. Treating it requires weekly injections of a chemo drug I hate. It does so much good, taking away her pain and allowing her to live a relatively normal life. But it's also literal poison. She has to have regular blood work done to ensure it isn't negatively impacting her organs. The medication renders her immunocompromised, which means every sick kid coughing around her becomes a potential trip to the hospital for us.

And I worry constantly about the potential long-term consequences of this drug for her future. For her ability to have kids. Her life expectancy. Even the safety of her working within certain career fields.

It's a necessary evil, but an evil nonetheless.

So when we were unexpectedly gifted with what her doctors called an inactive disease state and she could go off her medications for the time being, it felt like a miracle we hadn't even been told to hope for.

And for four months, that miracle endured.

My Daughter's Autoimmune Flare-Up

But somewhere in that timeline, things started to shift. My daughter began acting tired all the time. Her mood was all over the place. Something was wrong, but there wasn't enough evidence it was a recurrence of her condition just yet.

At least, not until the evening she came home from school with a limp.

That kicked off a two-week wait and see period with her doctors. But we didn't even make it to the end of that timeline before my little girl woke up one night sobbing in pain. It took me three hours to get her back down, and I knew. I just knew.

When I recounted to her doctors what had happened the next morning, they knew too. "It's time to start her back on meds," they said. "We'll send the order in to the pharmacy right now and you can pick it up in a few hours."

More injections. More blood work. More poison. And an initial course of prednisone (another necessary evil with as many side effects as benefits) to get my girl out of the woods.

I had known it was coming, and yet it still shattered my heart.

But I kept my game face on as I told my daughter our vacation from needles and medications was over. I maintained my cool even as the tears started slipping down her cheeks.

"We got four months," I said. "We're lucky. And we can do this now. Because we are strong."

She sniffed and nodded, and within a few minutes, she seemed mostly OK. We made a big breakfast together and curled up on the couch with a movie. And when it was over, she asked if she could go to a friend's house to play.

I agreed. It would give me a chance to go to the pharmacy and pick up her latest prescriptions.

My Breakdown

I hadn't gotten more than a minute away from her before the emotions I had been keeping at bay came tumbling out of me. The fear. The anger. The sadness.

I don't want to be giving my daughter weekly injections for the rest of her life. I don't want to have to constantly be waiting and wondering if things are getting worse. If she's in pain. If her joints are suffering permanent damage. I don't want this to be her life. She deserves so much more than this fight.

These are the thoughts I've struggled with ever since her initial diagnosis. And they are the words that tumbled through my head as the tears exploded from my eyes.

It only lasted a few minutes, my breakdown in that car. I called my dad and sobbed it out, and then pulled myself together and went to the pharmacy to get her medications.

By the time I picked up my daughter (with ice cream in hand), there were no more signs left on my face of the way I'd fallen apart.

And that's kind of what motherhood is, isn't it? Maintaining our cool when they're around so that they can see there's nothing to be afraid of, only to have our breakdowns in private, as soon as we get a second alone.

I want my daughter to see me having a range of emotions. I want her to know it's OK to cry, to be mad, to be sad or afraid. I don't always want to hide the big feelings from her. But when it comes to this, something I know she has plenty of her own big feelings wrapped up around, I also don't want to put my own fears and heartaches on her.

I think that some things go both ways. Because the very next night, as I prepared her medication and pulled it into the syringe, she presented to me with a stiff upper lip and her best friend by her side for support. "It's OK, Mom," my 6-year-old said, clinging to her favorite stuffy. "I think I like shots. They don't hurt, anyway. You can do it now."

And I did. Biting back my tears so that she could have some of her own if she needed. But she didn't. As I pulled the needle out, she smiled and said, "See? That was easy."

I'm not sure I'd go that far, but what I do know is that we've got this. Today, tomorrow, and every breakdown in between.

Advertisement

Comments

Be the first to comment!