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The Moment You Come Face to Face With Your Child's Diagnosis

Photograph by Twenty20

When my daughter was born, she was perfect: 10 fingers, 10 toes, the cutest little upturned nose. Most importantly, she was healthy. My daughter was healthy.

At 5 months old, she went to daycare. And like most daycare families, we dealt with a host of standard kid illnesses. I joked that, for a while there, it seemed as though her nose would never stop running. When she was around a year and a half old it all mostly seemed to level out. Illnesses became fewer and further between, and my little girl grew into this happy, rambunctious, healthy toddler.

Healthy.

Earlier this year, in what felt like a flash, that all changed. The first time I took her to the emergency room, I was sure it was meningitis. She had collapsed on the floor crying out about neck pain and leg pain so severe she couldn’t walk. I rushed her to the ER, where they acknowledged something was absolutely wrong—but it wasn’t meningitis.

We were told to follow up with her doctor the next day and, by the time we arrived for her appointment, she seemed mostly fine. But she’d spent that morning dragging her leg behind her when she walked, almost like it didn’t work. And she’d developed hives all over her face. Her neck couldn’t bend back and forth.

So maybe she wasn’t fine. It was just that she seemed happy again. Her energy was back. So it was hard to reconcile anything being wrong with this child who was otherwise kind of bouncing off the walls.

Still, her doctor was concerned enough to want to order an MRI. “Just in case.” What was she looking for? Brain and spine tumors.

Yeah, I didn’t sleep much that night.

The next day my daughter was put under general anesthesia for a 2-hour MRI, which revealed nothing. “It’s probably just some weird virus,” her doctor told me. “She’ll be over it in a few weeks.”

And you know what? She was. Two weeks later, my daughter seemed completely back to normal.

But two weeks after that, when I picked her up from school, she couldn’t walk.

Back to the ER. And back to her regular physician, where we were referred. It was at that appointment that we realized my daughter’s wrist had locked up. And the pain she was complaining about was ... concerning.

Leukemia was suddenly a possibility. That, or juvenile arthritis.

It was two more months before we had an official diagnosis. In that time, lupus, Lyme and multiple sclerosis were also thrown out as possibilities.

So when a doctor called to tell me my daughter had a confirmed diagnosis of juvenile idiopathic arthritis, I was actually relieved. Of all the possibilities, this was the least scary.

Then I started researching this disease. And I learned my daughter would require a protocol of three medications a day, two of which would need to be given twice a day. Two of those meds have a pretty foul taste, and one of them comes with a slew of undesirable side effects. On top of all that, I also have to give her a shot of a chemo drug every week. As you can imagine, there are also side effects (both short- and long-term) that go along with that.

Plus, imagine telling a 4-year-old she has to get a shot every week.

The alternative is so much worse, of course. JIA is an auto-immune condition, literally attacking my daughter’s entire body. She’ll need quarterly eye exams, as the condition can cause something called uveitis, which can lead to complete vision loss if not treated immediately. If we were to forgo all the medications she’s on, she could face permanent joint damage and loss of mobility.

As parents, we pick ourselves and our children up and we figure it out. We create a new normal.

Even on the medications, that’s still a possibility.

This is something that will affect my daughter’s childhood and, potentially, her entire life. She will have more doctors’ appointments than any other child she knows. She’ll be on more medications than any child ever should be. And she will forever be facing the possibility of bad days due to this disease, which may always threaten to hold her back.

My once healthy child now has a lifetime of challenges ahead of her, and I’ve got to tell you; it’s soul crushing for me.

None of this is what I would choose for my little girl.

While we are figuring it all out, and while she is responding very well to the medications, I feel like I’m only just now barely digging us out of the avalanche that buried us. We’re here. We survived. We will continue to thrive. But dammit this has been hard.

No one ever told me this could happen. No one ever warned me. You have this happy and healthy child who runs around in front of you all day every day. You get lulled into this false sense of security. You trick yourself into believing it will always be that way. And for so many people, it will be.

We just weren’t so lucky.

I have a friend who gave birth to two perfect, healthy kiddos before getting pregnant with her third. Everything about that pregnancy seemed to go just like the first two. She and her husband had no reason to worry. And then their youngest was born with a rare genetic condition that meant he was almost immediately whisked to the NICU, requiring a handful of surgeries in his first year.

That little boy is doing amazingly well today. But, like my little girl, he’ll be up against appointments with specialists, as well as varied risks and treatment options, throughout the rest of his childhood.

It’s hard. And I still find myself wishing almost daily that we could just go back.

Shortly after he was born, my friend told me that one of the hardest parts was just how the whole thing caught her off guard. They were figuring it all out, but it certainly wasn’t anything they had ever planned for. It wasn’t anything they knew to expect. And that shock of initially finding out what they were up against was suffocating.

I have another friend with three healthy, active kiddos who found herself in the hospital with her middle child a few years ago. The diagnosis? Juvenile diabetes. Their life now involves daily shots, monitoring and the ever-present risk of a crash.

These things happen. As parents, we pick ourselves and our children up and we figure it out. We create a new normal.

But when everything switches on a dime like that, when you go from having a healthy child one day to a future full of medical concerns and medications the next, it’s really hard. There is no predicting it. No preparing for it. And no way around it other than to just deal with it. You equip yourself with information, you become their advocate, you fight.

So that’s what we’re doing. We’re fighting. Just like every parent with a sick kid does.

But it’s hard. And I still find myself wishing almost daily that we could just go back. That my kiddo could just be healthy again.

Because honestly, she deserves so much better than this.

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