Joco Opinion

Mother of child with chronic illness feels blessed to have flexible job, good medical care

I was recently urged to share the story about my daughter’s health challenges. At 10, she’s several years into a chronic illness.

“Mom, my tummy hurts,” she tells me. Her main symptoms are chronic stomach pain and reflux.

I can often tell she’s getting sick before she realizes it, just by looking at her eyes. When her peepers are droopy and dull, we have to slow down and add extra doses of medicine until the pain is gone.

“What’s wrong with her?” you may be wondering. (Don’t we all?)

“It could have been caused by a virus, an allergy, or a bacteria,” we’ve been told. We’ve seen specialists galore, talked to other families who deal with it, and researched on our own. The condition is diagnosable, the cause is elusive.

I’ll get quickly to the good news. It’s under control — for the most part, at least. With a daily antihistamine and acid reducer, she’s pain-free most of the time. The stomach damage is healing, and she’s likely to grow out of it. The medicine she takes is similar to what someone might take for hay fever. And when she’s off it, she often experiences allergy symptoms such as itchy eyes, or even hives, so her medication serves as a double-whammy to whatever ails her.

The story here is not how unlucky our situation is, but rather how amazingly fortunate and privileged we are. I think often of how much worse it could be. The realization that it is worse — much worse — for many others is hard to fathom.

How do they do it? I often wonder.

Life as the parent of a chronically ill child ain’t easy.

I couldn’t dream of holding a full-time job — especially over the last two years when we were struggling to control her situation. At its worst, she missed many weeks worth of school, which would have meant that I, too, would have missed time adding up to months’ worth of work. I’m a good employee, but not many traditional jobs would let that slide.

But my skills lend themselves to working from home, and I’ve been able to find part-time work with the flexibility I need, so I’m able to maintain a job. And my husband is able to support us. We’re privileged.

Can I tell you about the stress? Have you had a child crying, pleading with you to make their pain go away? Try that for weeks on end.

It’s a horrible thing to look at your child and wonder, “Is she dying?”

How very blessed are we to have medical tests and doctors who assured me that not only can her condition be controlled with simple, safe medications, but she’ll likely grow out of it, and it’s not expected to have long-term effects.

We’re so very lucky.

She sometimes struggles with grades when she misses school. Yet she’s a fighter: one who has high expectations for herself, works hard, and is willing to keep tackling her grades. How easy it could be for a child to fall so far behind that they give up.

I’ve held my breath when opening medical bills. As big as those checks we write can be, I can always see the insurance payments, and know they could be bigger. What solace it provides to know we can get her the healthcare she needs.

With chronic illness comes chronic stress, inconvenience, pain, unreliability and uncertainty. We rely on our insurance heavily, on being able to get by on one income, on the grace of others.

And to all those parents who have it worse than we do — and I know there are many — God bless you. I’ve only had a little taste, and I know, it ain’t easy.

Reach Overland Park mom Emily Parnell at emily@emilyparnell.com. On Twitter:@emilyJparnell.

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