“[This is the story] of a woman’s devotion to the child who is both her burden and God’s singular way of smiling on her…” Jewel, Bret Lott
I recall reading in Susan Senator’s book Making Peace with Autism about going through periods of crisis with your child, and how some crises can be so difficult that there’s nothing to do but hold on for dear life and wait for the storm to pass. I feel like we’ve been in a crisis like that.
My girl has gone through a dreaded regression and has been exhibiting behaviors even extreme for her. She seems to have lost all toilet-training. She’s up all night doing her up-all-night antics of yelling, crashing, banging, humming, breaking down her bed. She’s been very hyperactive, a tornado, out of control. She’s picked up a new hobby of eating things that, well, you just don’t eat. She’s stripping. She’s been harder to engage than ever, prompting her beloved therapist T to say “this is the worst she’s ever been.”
I’ve been in a haze just trying to hold on to patience and keep up with all the messes and bathroom accidents all over the house. (No use putting on a diaper, she rips them to shreds). When I complained to my friend Carrie that I’d been destined to a life of poo-cleaning, she reminded me of Jesus washing the smelly, dusty, cracked feet of his disciples – how He humbled himself to clean their filth. It may sound funny, but it’s given a little purpose to my days. To think that I’m serving Rhema in love, but more importantly that I’m serving Him as I care for her. Let my lifesong (everything I do) – even this – sing to you, Lord.
I’ve always been confident in my ability to figure out what’s going on with her. When her sub-clinical seizures returned last spring, I knew. This time around I was unsure. Her doctor (and others) suggested that the sudden increase in behaviors was due to Brandon’s absence. While I agreed that that was certainly part of it, I just couldn’t believe that was all to the story. I was concerned that the seizures had returned or her medication was making her crazy.
Finally, yesterday her doctor agreed that something must be done. We increased her anti-seizure med – this will either calm her somewhat or make her more hyperactive. Her doctor is also scheduling her for another overnight EEG in the hospital.
Last night after the medication change, we finally all slept. In fact, we overslept. And it felt GREAT! (Amazing what a good night of sleep can do.)
It remains to be seen whether the crisis is over, but I’ve got my second wind. I know we’ll make it.