Of all the prayers in the Bible, I don’t recall anyone praying that their child would have a seizure. Or that they’d spike a fever. Or that they’d have a meltdown in class.
But I have.
These are some of the alter-universe prayers I find myself praying for one of our daughters who has developmental delays, GAD, RAD and ODD—a.k.a. hidden disabilities.
Here’s my girl. See if you can discover why we pray weirdo prayers like this:
(Yes, she really is singing Lady Gaga’s “Born This Way” with about 40 electrodes pasted to her head.)
I prayed last week for her to have a seizure because she nearly drowned this summer during one of her seizure space-out moments, and the doctors didn’t believe they were what we described. It’s not a new issue for our daughter. She’s an enigma, that one. Perhaps some here can relate:
- She’s tenacious and strong-willed… so it took 6 years to discover her persistent no-medical-reason-for-it soiling and wetting wasn’t behavioral, it was a hormone imbalance.
- She’s precocious and daydreamy… so it took 3 years and having to retain her in school for the IEP team to meet about her processing deficits.
- She’s moody and dramatic… so it took 2 years and her almost drowning in a jacuzzi to get a neurologist to take her lapses in consciousness seriously.
We’ve spent thousands of hours at Children’s Hospital, therapist offices, and banging our heads against her homework. A few years ago, in a moment of utter desperation, my prayers began to shift from theological to primal.
I prayed she’d get caught mixing up numbers, letters and facts at school. I prayed she’d wet herself during our stay-dry visit at the Urology clinic, so they’d see the wetting wasn’t connected to behavior.
And last week, I prayed she’d have one of her alter-consciousness moments during the EEG we finally convinced the doctor to order. I prayed hard. I asked friends to pray for it. I had my ministry prayer team pray for it. I needed this doctor to catch on record what her teachers, our extended family, my husband, and I had seen over the past few years.
Ever been there?
When the school nurse called to tell me my daughter had one of her episodes while that EEG was hooked up, I dropped the phone and did a happy dance. I thanked God for loving my kid and me so much that He answers the weirdest prayers ever (who prays their kid will have a seizure??!) so my girl can get help for what’s been keeping me up at night. (And when she’s crossing streets. And when she rides her bike. And when she wants to go swimming. But I digress…)
They say necessity is the mother of invention. I say desperation is the mother of gut-level, say-it-like-it-is prayer for a parent raising a child with hidden disabilities.
Anyone else have a child with hidden disabilities? Ever prayed a Twilight Zone prayer? How’d that situation turn out?
P.S. Want to share your story about crazy prayer—or any other aspect of your special needs parenting journey? I’d love to hear more… and so would the readers of my upcoming book, Get Your Joy Back: From Stress and Resentment to Calm and Confidence in Your Special Needs Family!
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