6 Things I Want My Chronically Ill Child's School to Know About My Parenting

Yesterday as I was waiting in the car line at school to pick up my boys, a teacher with a clipboard stopped by my window. I rolled the window down and here’s how our short conversation went:

“Did you send money with your kids for the book fair?”

“No, I didn’t.”

“Well, why not?  Today is the last day!”

“Honestly, I forgot all about it.”

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She seemed appalled that I could’ve forgotten about the book fair.  Yes, the school sent flyers home and my kids brought catalogs home.  But the truth is that when you are parenting a child with a chronic illness, things like the book fair are the least of your concerns.

My son had vagus nerve stimulation (VNS) surgery in January, which means that now he can survive without all of his anti-seizure meds. That’s great, right? But getting off all those medications is a long process. And because he is so sensitive to medication changes, he experiences legitimate drug withdrawals accompanied by withdrawal seizures. (Yes, the anticonvulsant weans are all under his neurologist’s supervision.)

So, in addition to trying to keep my son alive through the withdrawal process, I have to keep up with countless doctor’s appointments, evaluations and therapy; not to mention parent/teacher conferences and IEP meetings, as well as keeping up with the house and helping with homework. Plus, Boy Scouts is on Tuesday nights. Pardon me if the book fair just happened to slip through the cracks.

So to my child’s school, I’d like to say a few things:

Please don’t judge me for forgetting about events like the book fair.  I have so much on my plate that the book fair literally isn’t even on my radar. The important things like keeping my son alive and making sure he gets to doctor’s appointments and therapy are what matters most.

It will probably happen again. This won’t be the first time I will forget.

There are some events that I may choose not to attend. Not because I don’t want to be involved or don’t care about my child, but because if I’m going to stay sane, I need time for me.

If there is something really important like sending money for a field trip, I may need a few reminders. Maybe even a phone call. I won’t see it is nagging. I will need the extra reminders.

Be graceful with me. Understand that I have more on my plate than the average parent. Try to see things from my perspective.

And lastly, I really do appreciate all you do for my child. I know it is difficult meeting all the needs of a child who is chronically ill. A student who may miss class sometimes for doctor’s appointments and therapies. I see the extra effort you put in to make sure my child’s needs are met, and it means the world to me.

(We did end up back at the school for the book fair after the teacher’s reminder and the kids were able to purchase a few things.)