If you want to know my biggest fear as the mother of a child with special needs, it is this: what is going to happen to my son when I am gone?
Mostly, I don’t think about it. Scott is 8 years old, so adulthood feels like a million years away. I know better–it will fly by in a blink–but there’s this little thing called denial. Denial is my friend. Denial helps me sleep at night.
An article made the rounds on Facebook recently–you might have read it. It was written by a young, single woman, Jeanie, who is full-time caregiver to Edna, her older sister. Edna has a severe intellectual disability. Their parents are dead. Like so many others with disabilities, Edna is on a waiting list for a home environment providing good care. In the meantime, without access to services she needs, Edna is totally dependent on her sister. Jeanie says she shares their story to bring awareness to the lack of services for those with disabilities, and also to “show people who have no idea what it’s like to care for someone with a disability (or even a loved one who is sick) that it can be rewarding. … Exhausting. Painful. Isolating. But, rewarding.”
I found so much comfort in this piece, in reading about the love and protectiveness one sibling feels for her sister, whose needs are numerous and exhausting.
I thought of my three children who were born after Scott, how I want so much for them to feel the same level of commitment to their brother.
“Please let them turn out like her,” I thought to myself.
And then, “What can I do to make them turn out like her?”
Here’s the answer: I’m not sure. What can we do to make our children turn out like anything at all? We do our best to shape them and guide them, but in the end, they are their own people. They make their own choices.
What if mine don’t choose their brother? What if they opt out of sacrifice and instead choose–I don’t know–world travel? Would I fault them?
What if they feel bitter and resentful and IT’S NOT FAIR about their brother? Because let’s face it, it’s not fair. What’s fair about giving up your 20s to manage the personal care–bathing, toileting, feeding–of an adult sibling? Would I really want my future adult daughter to turn down that awesome job in Paris, the one that could launch her career, because she has an obligation to her disabled brother? Do I want my adult sons to feel tied to this area, unable to move away, because they can’t leave Scott?
I don’t know. Maybe. Yes. Yes, I think I do.
I hope it won’t come to that, and probably it won’t. I’m counting on seeing Scott well into his 40s, at least. I want him to live as independently as possible, be it in a group home or whatever. But if I were gone, and if a suitable living arrangement couldn’t be found, I want his siblings to step in. Please, please let them step in.
And this is why I generally opt out of thinking about Adult Scott. Because the unknowns can be scary, and my imagination can go haywire until my chest hurts with the anxiety of it. Especially if we’re talking about a time when I am gone. I can’t imagine a world where Scott is living and in need of care, and I’m not around to give it. He is so vulnerable. It is terrifying.
If only I could know my kids would look out for him, that they would be involved with his life in a meaningful way, Scott’s future would seem less frightening. Maybe it’s too much to expect of them, I don’t know. Maybe I’m being unfair. Maybe they’ll resent me or him or our whole family dynamic.
But I hope they won’t. I hope they grow to feel the burden is light. Or better yet–not a burden at all.
(Betsy Swenson can be reached at firstname.lastname@example.org.)