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.

12 comments:

  1. I know this is different but my mom said when we(my twin sister and I) were in the NICU, people kept telling her how brave she was. She told us "I was not brave, I did what a mother had to do." It has always stuck with me and I have adapted it for when people say I am brave for disability related reasons "I am not brave, I'm just doing what I have to do/ I'm just living my life." Glad to hear Max is good.

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  2. I think that, to an extent, bravery boils down to feeling afraid and devastated, but recognizing the need to push on anyway. Granted, I'm fresh out of high school and haven't a clue what I'm talking about, but I think you're incredibly brave- especially because you don't feel that way. This summer, I start my first actual career-related job (I'm on track to teach moderate to intensive special education) as a graveyard shift home care aid for a lovely woman with some predisposition towards seizures (among other things), and if I can handle myself half as well as you do, I will be so proud. Thank you for the example you've set through these scary circumstances.

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  3. I am not brave. People just can't see my knees shaking.

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    1. I completely agree with you it's the same with me also because they can't see my leg braces under my pant legs that sometimes are the only things keeping me from falling

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    2. For me, it's a metaphor. I don't look nervous, but I may be terrified inside.

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    3. Oh oops...I now get why most people don't use metaphors and similes most of the time when I'm around I tend to take them literally

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  4. You are not alone! I love reading your blog, just so I know there are other mom's out there that share my same fears and troubles. It's as cathartic to read as it is for you to share. Keep up the great work...hearts and hugs to you.

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    1. Well said, Heather! Ellen, it does help to read you your blog. My 13 year-old son with CP recently started anti-seizure medication. He did not have a history of seizures - I thought we had dodged that one. But here we go - another new chapter for a boy with many already. Cathy

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  5. Bravery is not necessary. All you need to do is breathe - just get through this moment, no matter how awful it is. If you have to drink gallons of OJ to get through it, drink the damn OJ! It won't last forever and you can watch your sugar intake another time. Good luck, though - this is the stuff PTSD is made of and pregnancy hormones make everything worse. Thinking of you. Stay strong and don't worry about being brave.

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  6. You are not alone!! My son was perfectly healthy until he had his first seizure at 6 years old. For the past 4 years he has had seizures just about every single day and even several a day at times. We have tried multiple meds and treatments and so far nothing has worked. I felt so alone, I still do at times. To all of you out there, big hugs. We need to support each other. One of the things that makes me feel better is to be able to help others going through a hard time.

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  7. Hi. I sometimes feel like I'm the only one. You see my son with autism is days away his 23rd birthday. He had his first seizure at 18, yeah 18. It knocked me for a loop. One minute we're watching TV, next minute he's having a grand mal. Over a two year period he would have 6 mostly grand mals. However, all the progress he made from the autism diagnosis until about 19 deteriorated causing me to wonder what would have happened if I didn't put him on meds. He's seizure free for almost 2 years now. Neurologist can't figure out this enigma. have to watch my 15 year old in case it happens to him. It's the grace of God that gets me through.

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Thanks for sharing!



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