Dear special mom, I thought I was strong until I met you

Dear Special Mothers,

Thank you for this lesson in how to give.

I

read a letter published in these pages from one of your own, thanking us volunteers. But it had me thinking — we aren’t the ones to be praised. We aren’t the ones who live with a special child 12 months of a year. And I’ve noticed and admired so much of what you do.

Taking care of special children can be draining, and there’s often little respite, especially for older children. There are Sunday programs, the occasional Shabbos volunteer or shabbaton, and — if you’re lucky enough — camp, but that’s usually where it ends.

When I was a counselor in a special-needs camp, I came home utterly worn-out. I can only imagine how exhausted you are, taking care of your child every day of the year with all the love and care they deserve.

So many of you, the mothers of medically fragile children, serve as your children’s nurses. You’ve learned how to use G-tubes and Bi-PAPs, oxygen concentrators, and suction machines. None of it is for the faint of heart, yet you do it, day in and day out. Your child may have nursing care, but that’s often not enough; no one knows a child’s medical needs like a mother.

Then, there are those of you struggling to keep your child’s diagnosis a secret from the world. Why should strangers have preconceived notions about your child’s “special needs”? Your child is incredible in so many ways; so what if they have some added challenges? And when your child has a meltdown in public and no one understands why, it takes all your willpower not to break beneath the judgment that you sense.

And how do you find support without the whole world knowing your secret? Do you get a mother’s helper and hope she doesn’t pick up on anything? Do you send your child to a program and opt out of the photo release?

You are grateful to your volunteers. But there’s one element that you might not consider when it comes to us — we gain so much from you and your child.

I write this as a volunteer respite worker, a counselor, and a paid worker with plenty of experience. Your child with behavioral issues and severe social deficits teaches me patience like I’d never know otherwise. Your medically fragile, wheelchair-bound child teaches me responsibility and empathy. And every child teaches me to respect. Every child, no matter his or her ability or disability, is infinitely deserving of respect.

It must be so hard to let someone into your home, yet you always have a smile on your face when I come, always offer me a drink, always offer me so much —  a shift in perspective, most of all. You remind me that everything is a brachah from HaKadosh Baruch Hu. You show me the strength it takes to be able to accept help from others.

You taught me to be willing to do it all with grace.

Thank you for this lesson in how to give. And even more, thank you for teaching me how to take with grace.

Love,

Your Child’s Volunteer

(Originally featured in Family First, Issue 977)