5 hours ago
Wednesday, May 27, 2015
On not being a brave special needs parent
Max is doing OK following the Saturday night seizure. He went on the increased anti-seizure med dosage last evening, and soon after he felt very sleepy, as the neurologist said he would. He crashed by 7:00 p.m.
I remain haunted by what happened; I can't stop picturing how Max looked when he was seizing, his body shaking, his eyes rolled back and his consciousness gone. A comment a reader left rang so true. As Michele L. noted, their neurologist "says she worries much more about the effect of these seizures on us, the caregivers that watch them, then she does the kids."
We so need that Men in Black Neuralyzer to erase the memories of seizures we've seen.
I shared here about Max's seizure not because I think I am brave, but because it is cathartic. I lived through it with him not because I am brave, but because what choice do I have? In fact, Dave and I are lucky Max does not have a full-blown seizure disorder, as some children with CP and other neurological disorders do. Some parents contend with seizures day in and day out. As I sit here freaking out about one damn seizure, I think of them and what they go through.
I am not brave for raising Max. Determined? Yep. Tenacious? Yeah. Refuses to take "no" for an answer? Oh, yes, as various members of Team Max would readily agree. But as I lay in bed holding a violently shaking child, I was scared out of my wits. I wanted that seizure to be over, for Max's sake and my own.
There are times as Max's mom when I'd like nothing better than to crawl under the covers, as happened recently after I got a dismal report from our school district on the results of Max's speech testing. Given that there's only so much big, fluffy comforter therapy you can do, there's Pinot Grigio, unless you are pregnant and then you are left sitting in your kitchen at night and binge-swigging orange juice despite your doctor's orders to watch the sugar.
Having children poses a daunting paradox: You are acutely aware of the need to protect them—and how utterly powerless you are to protect them. As a college acquaintance commented on Facebook, "I think every parent at one point has felt complete helplessness regarding their child's health, and it really makes you the most vulnerable and frightened."
Although most parents never see problems coming, as the parent of a child with special needs you do know what devil to dread. I don't worry how the cerebral palsy will affect Max over the years, because that's too amorphous to consider. I do worry about the seizures, because I know how they consume his body and that he is at continued risk for them. I worry that Max is having some sort of seizure when he stares into space (a potential absence seizure), lets out weird noises at night or has a muscle spasm.
I am so not brave in the face of that devil.
After the seizure passed, I desperately wanted my mom. Except she is elderly and I chose not to burden her with this. Besides, I AM THE MOM. This responsibility is on my shoulders, ones that sometimes slump from the weight of a situation.
I take comfort in knowing that Max is being looked after by excellent and kind experts. I had a reassuring conversation with his neurologist last night about the increased medication, what kind of seizure it likely was (a generalized seizure, aka a grand mal) and why it happened (metabolic changes combined with a series of late nights). And then, there's that it-could-have-been-so-much-worse perspective—I was right there when the seizure started plus it lasted under two minutes, as my friend Peggy and I texted about yesterday.
I need that reassurance to weather the scary parts that come with this parenting job. I will continue to live in fear at the thought of Max having another seizure, my saving grace being my ability to compartmentalize upsetting things. And I will carry on, because I am a mother doing the best she can. Pass the OJ, please.