I read an amazing story this weekend that also left me troubled. It's about a single mother in East Hanover, New Jersey, who turned 100 years old last week. That in itself is remarkable. Even more so: She continues to care for her 57-year-old son, who has Down syndrome and autism.
Carmela "Millie" Scarnato has been on her own with Leonard since her husband left them when Leonard was three, reports the Morristown Daily Record. At a time when it wasn't uncommon for parents to institutionalize children with disabilities, Carmela wouldn't have any of it. To this day, she takes care of bathing, dressing and feeding Leonard, and there's a daytime caregiver who pitches in.
"People ask me, why don't you put him away? Never. I will never do that," she said. "Something happens to me, that's a different story. I won't be here anymore. But as long as I can take care of him, I'm taking care of him."
Oh, man. Grab the tissues. Because if you are the parent of a child with disabilities, you are not sobbing because of this mom's amazing dedication. No, you are that mom, even if you are decades younger. You are crying because of the worry you don't voice that is always, always there is: Who will care for my child the way I do when he's gone? Who will love him the way I do? Who?
Your child may have siblings—Leonard has two, who presumably will be there for him. Perhaps you've done some estate planning and chosen guardians, or you will. (Here's some info on special needs trusts.) We put together a letter of intent just in case Dave and I were to unexpectedly pass. A letter of intent contains a detailed explanation of all your child's needs and support systems (here's a good letter of intent you can download and fill in). But you know that nobody will take look out for your son or daughter quite like you or your spouse. This thought flashes into my mind on occasion when I'm doing something for Max, like brushing his hair or rubbing cream into his skin. Or when he and Dave walk in the door from one of their day trips in New York City and Max announces, "Daddy is my best friend!"
It's too mind-boggling and painful to ponder, this thought. And so you leave it there in the back of your mind.
Someday, you will deal, but not now.
Image: Dennis Scarnato
I read this and yes, felt wonderful, but also worried. If he does not transition to a new living environment while she's alive, how much more traumatic will it be for him when she dies and suddenly he has to acclimate to moving presumably within a short time of the loss of his mom?
ReplyDelete