“Hey kiddo. I’m here with you. Take that breath when you can.”
She may or may not be hearing me. I’m in my “calm mama” mode, the one that I engage when the seizure gets underway.
First comes the noisy, labored breathing. Then the staring eyes and the quivering. And then, if it’s going to be one of the scarier ones, the next breath doesn’t come on cue.
The skin on her face and neck turns gray-ish. Deep circles emerge under her eyes.
It’s hard to count one’s blessings while counting the seconds since the last breath.
But, we’re luckier than many.
The expensive medications that literally keep our daughter alive (despite not managing to keep the seizures all the way under control just now) are covered by the solid insurance that we get through the State of Wisconsin. The private sector would be a more lucrative career but public service is a way of life for us — and at least the insurance has been good. And no lifetime limits on coverage. Just now, anyway.
We know that there is a lot of deep resentment against people like us, with taxpayer-funded salary & benefits for work that is done in an office.
“C’mon honey. Time to get breathing again.”
Medicaid is a part of our lives right now too. Epilepsy is just one element of her disability issues, and we qualify under a Home and Community Based Services waiver, such that we get help with co-pays and incontinence supplies and specialized respite-care.
When she becomes an adult and we can no longer have her on our insurance (will that still be age 26, as now? or 23, or 21?) — Medicaid will be the funding source that pays for the meds that keep her breathing.
Usually.
If her care doesn’t get rationed into oblivion in the wake of the 25% Medicaid cut that’s part of the so-called American Health Care Act that passed a cruel House of Representatives last week.
We’re already plenty scared and exhausted.
The expensive medications are what keep her alive.
“Breathe, baby. You can do it. Breathe.”