Marcie Schein Randall

Special Needs Portraiture

Mitzvah Planning for the Special Needs Family

I finally had my meltdown.

Bar Mitzvah is a month away, and I am totally on track with the planning.

Invitations went out, responses are slowly trickling in. I might have gotten the last tent in Massachusetts for this particular date. Excellent food choices. DJ, photographer, videographer are all set to go, and they all have experience working with people with disabilities, which is key. I’m checking things off of my To Do list every day.

Harrison is keeping up with his practice. He is working on his D’var Torah, he has decorated his spice box, and he has made his Havdallah candle. He has his Tallit and kippah, both very special gifts from very special people. His teachers have been guiding him beautifully through his entire Hebrew and Mitzvah education.

He gets crazy giddy when he talks about his Bar Mitzvah, and when people ask him about it and tell them how excited they are for him. He is so ready.

So why was I crying the whole ride home from his lesson this week? I’ll tell you. It was, big surprise, over something I cannot control.

Seizures suck.

Harrison did a great job through most of his lesson this week, and then he had a seizure (which happens daily, no biggie, it’s just part of his life, our lives). Sometimes after a seizure he shakes it off and picks up where he left off. And sometimes the seizure knocks him out and he sleeps for a good chunk of time- 20 minutes, an hour…we never can predict. And the only real seizure trigger we have ever noticed is fatigue. And that’s fine.

We have learned to work around his sleeping and we make the best of it. This, by the way, is why when I plan outings with him, it’s always an activity that I know I will enjoy whether he is “present” or not. I’ve had too many long rides and expensive entrance fees that have ended in disappointment and frustration because he has a seizure, falls asleep, and the day is a wash. So, really, it’s fine. I have fun, and if he is awake and alert, he has fun too.

Special occasion stress

This was different though. He didn’t even sleep that long after this seizure during his Mitzvah lesson. But as we made our way home, the scenarios began flooding my mind.

  • He’s going to have a seizure right when we are ready to begin the service at 5:00pm, I know it.
  • He is going to sleep, hard, from 5:00 until 6:00. I am going to have to do some song and dance to entertain everyone- good thing we have a dj.
  • I’m going to have to smile my way through it all, shrug it off, and hope our friends and family don’t feel like they wasted a trip to our home, especially those who travelled from out of town.

I went from feeling a little blue, to anxious, to all out sobbing over the course of the half hour ride.

Having a medically complex child means you have to be especially flexible, have a back up plan, and have the ability to let things roll off your back. I am, and I do. But I really, really want this to be a wonderful day. And Harry does too.

I know I’m not alone, and I know many of you caregivers of medically complex kids can relate. We don’t always need sympathy, or advice, or to be told how great and strong we are as special needs families. We are all just dealing with things as they come.

It will be memorable, no matter what…

A friend suggested I think about what I actually can control. I can control what I tell him in my speech. I can control how I handle whatever does happen that day. I can see it now- he will fall asleep for the service and wake up strapped into a chair, in the air, supported, literally, by people who love him bouncing him up and down while we dance the hora around him and celebrate him like he deserves. And hopefully he will start giggling.

Whatever that day brings, we will follow his lead. We will make it work. We always do.

He will have his day to officially become a man.

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