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Caring for People in Pain First Person Parenting Self Care

Chronically Ill Teen? Fighting the Dread

I remember that sick feeling in the pit of my stomach every Sunday afternoon.

Sunday at 3:00 was youth orchestra.

When my son first developed migraine disease, attacks came like clockwork. Every Sunday around 2:30, he’d begin to yawn. Then the auras would start. I’d see him start wincing from light and then, just as we were ready to go out the door to orchestra, violin in hand, the pain would hit.

Every. Single. Sunday.

If were were lucky, the attack would lift maybe Tuesday. Often it was Thursday morning.

And it scared me. Not just because he was missing a ton of school. Not just because he’d be curled in a ball in his bed under the covers in the dark. No. It was more than that.

I was scared about the future.

Because every single thing I read about migraine told me how important it was to nip them in the bud. How migraine attacks spawned more migraine attacks. And every single time he had a migraine, it increased the odds he would have another one. And he was already having a LOT of them.

And he was already missing so much school. He’d just started high school, but what if he didn’t pass . . . .

Dreading the future

Fast forward to sophomore year. My son had spent most of the past two years in a self-induced trance trying to escape his pain. He’d failed or almost failed all of his classes. He was getting excellent care and great support from a gifted clinical psychologist who helped him cope.

But NOTHING touched his pain. NOTHING stopped the migraine attacks. Not preventives. Not lifestyle changes. Not rescues.

Pain so high he could barely speak for a week at a time. Or five weeks. Or longer.

And now his friends are thinking about college. And I don’t see any potential for him to finish high school. And adulthood . . . . Who knows?

So every single issue becomes an existential threat. No school today? Fail the test . . . the class . . . the year. No homework? The same disastrous spiral.

I could hear it in my voice. The strain. The pressure. The pushing too hard. It was eating our relationship.

Stepping back towards reality

That’s when it hit me. I had lost sight of my son. All I was seeing was his pain.

All I was seeing was failure.

I had lost track of where he was right now. And what he needed RIGHT NOW.

Right now, what he needed was to get better. The first step towards doing that was to get up and begin to function again. To step getting worse.

To be HAPPIER.

To be LESS STRESSED.

To start taking back his life.

So that’s where we focused. The goal was just to make it to the dinner table. To walk around the block. To get to school.

If he made it to school at 2:30 in the afternoon, AWESOME. He made it to school.

I knew how hard that was for him. That was a triumph.

Every day when he got home, he was a little better than when he’d gone in. When he asked him about something that went well that day, there was always something. A friend he’d said ‘hi’ to. A factoid from social studies class. An ice cream at lunch.

One step at a time. I stepped back. We refocused on the now. Pressure dropped. Motion went forward.

Plan A, B, and C

Towards the end his junior year, I could feel my old friend, Panic, rising again. His functioning was better. He was so much happier. He was making it to school most days for most of the time. Still no effective treatment, but we were having some glimmers of hope.

But college was looming and I still didn’t know if he’d make it through high school.

Okay, this is on me. I’m a college professor. School is important to me. Holding a job is REALLY important to me. It’s hard without an education. And being sick is expensive. My health insurance wasn’t going to cover him forever. If he couldn’t work . . . .

Yeah, dread and real fear for my son started to eat at me – constantly – again.

And this is where planning comes in. Not the ‘planning’ where everything goes right: smart kid goes to high school, does great, sails off to college, gets a job, finds love, and lives happily ever after.

That’s not planning. That’s a dream.

Real planning comes into play when things are not a dream. When you KNOW nothing is going to go the way you want.

So goal: Having the skills to get a self-sustaining job with health insurance by the time he was 25.

Best case: high school, college, job by 22.

Another scenario: Same path, but it takes longer, become he can’t go full time.

Alternative: high school, community college or training, job.

Next alternative: GED, community college or training, job.

Next alternative . . . . and next . . . and next . . . .

Liberating

Those different scenarios aren’t magical. Or transformative.

They certainly are not set in stone.

But what they did for me as a parent and for him as a very sick teen growing into a man was to provide options. Take the pressure off.

Those alternatives made every little thing LESS CONSEQUENTIAL.

Something doesn’t work out? Setback? Failure?

Yeah, that’s going to happen. Keep your eyes on the prize. We grow through setbacks.

It’s not perfect.

I still don’t know if he’s going to meet his goals. My son did graduate from high school (thanks to an excellent disability coordinator and a truly committed group of teachers and administrators). He took a year off to work on his health and got a job. He has started community college. Part time. It’s been rocky. College that’s a huge reach for someone who missed almost all of high school because of illness. However, when you have a hard time counting on your schedule, college seems to provide a more flexible pathway towards a career than other types of training. But he’s moving forward.

He has good days every week. Good hours every day. And his bad days are what his good days used to look like.

And he’s building a future he’s happy with.

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