Our Lives

Our Lives: It’s safer inside our bubble

July 27, 2013 

Earlier this year, my husband Greg lost his paternal grandmother, Maddy. She was a kind and big-hearted woman who insisted on serving you as much food as she could fit on a plate when you came to her home.

At least, that’s how I remember her. The last time I saw her was Christmas 1999, when Kenny, our oldest son, was just a baby. We took him to St. Louis, where most of Greg’s family lives, to show him off. That was the only time she saw him. She got to see our youngest son, Theo, only once too, when he was 2 years old and Greg flew out there with him for a visit.

Greg’s grandmother didn’t understand autism – she used to ask Greg if the boys were still “sick.” But I think she would have loved them, regardless of their behaviors and quirks, if she had had the chance to know them. That’s just the kind of person she was.

Greg and I both travel about once a year to visit our respective families, but always separately and always without the boys.

Neither of us is from North Carolina, and the only relatives we have in the state are my parents, so few of our extended family members come to town regularly enough to get to know the boys.

It wasn’t a conscious choice to keep the boys away from their relatives. The challenges of traveling just seemed so daunting that we never tried. And the likelihood was high that the boys would have behavior issues while on the road or at someone’s home.

The stress of being in new places, dealing with new people, and losing all of the routines and comforts of home would be hard on them. Theo yells when he’s stressed; Kenny hits himself in the head. It’s the sort of scene we dread dealing with in front of other people, even family.

Every once in a while we think about heading to St. Louis for Christmas or a reunion, but a big get-together seems like a bad choice for a maiden voyage. We should try a more low-key visit first, we tell ourselves. But we never make plans, instead falling back into our usual routines inside the bubble of our nuclear family.

Our bubble is just so darn comfortable! It took us years to create a home where the boys are safe and comfortable, where the happy parts of their personalities can thrive. They are loving, silly, confident and impressively self-sufficient when on their own turf. And at home, we don’t have to answer questions or try to explain behaviors or be confronted by the simple perfection of everyone else’s kids.

Our bubble is strong and well-protected, and we are content in it. It’s hard to give that up, even for a week.

This self-imposed isolation makes me sad sometimes. My relatives are scattered around the country, and I haven’t seen some of them in decades. I especially miss being around lots of family at Thanksgiving and Christmas. But in the day-to-day, I’m too busy to think about it.

Then recently, we started working with an attorney on estate planning. Of course, my parents would take the boys if anything happened to Greg and me, but my parents are not young people. When we die, be it prematurely or of old age, the boys will need someone who will look out for their interests and well-being for the rest of their lives.

It would have to be someone younger than Greg and me, someone who would likely still be around after we are gone. But it should also be someone who knows and understands the boys and who cares enough to make sure they are happy. Right now, we don’t know who that person could be.

That has us rethinking our choice to stay in our bubble. Not giving the boys the chance to know their extended family has deprived them of a support network they could some day rely on.

Assuming no unforeseen accidents befall Greg or me – knock on wood – we still have time to build that network. But it’s going to mean hitting the road, despite the stress and challenges. It will mean letting others see the boys in both their good and bad moments, in hopes that a younger family member will step up and make the effort to get to know them.

Because this bubble won’t last forever.

diane.e.morris@gmail.com

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