Imagine this scenario: an acquaintance comes up to you at a function, and you exchange the usual pleasantries—how ‘s the job, the kids, etc. And then he or she says: So, how old is “your spouse,”—“50” or so? How’s his health? Think he’ll get cancer or have high blood pressure? Have you thought about being a widow someday ? Would you sell the house?
No one in their right mind would say these things.
So why does this scenario actually happen: an acquaintance says, so, how is your child “y”—the one with “x.” How severe is he? Do you think he’ll live on his own? Will you put him in a group home?
If you are like me, and not expecting such encounters (though by now I really should), you end up answering nicely; and then kicking yourself afterwards, both for not coming back with a zinger, and for allowing the encounter to hurt.
Parents of “regular” children hope that the future will be clear, that the bumps on the road will be minor and overcome, but there are no guarantees. Parents of special-needs children try hard not to obsess over the future, because they have already been jolted by some pretty scary potholes, and the road ahead is filled with uncertainty.
On the other hand, if you are like my husband and me, you have found that the paradox of having a special-needs child is that, while the worry can be searing, the joy is often overwhelming. In time, the acceptance of a diagnosis once devastating becomes an appreciation of the unique gifts and strengths of your child. Pride at his accomplishments is unmatched; love for children like him multiplies; compassion for other families leads to abiding friendships and impassioned advocacy. Life is richer.
When the worries about the future creep in, it is not so much about who your child will become or what they will accomplish, but about how who will be there to love him as much as you do. Will he be understood? Will he ever be alone? And that is where parents, although they know it’s impossible, are determined to live forever .
And so perhaps one might understand that, in the day to day, we try not to focus overmuch on, for example, independent living vs. group home. Nor do we deem such issues topics for casual conversation, certainly not from people whose purpose in asking is not to offer compassion or aid, but to analyze and compare our lives with their own.
There is a great peace to be found in living in the present moment—not by avoiding planning for the future, but by dealing with it one step at a time. None of us can control the future, after all, but we can watch it unfold as we try each day to be our best selves—as parents, as friends, and in our conversations.
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Maria McFadden Maffucci is the editor of the Human Life Review