Disability parenting and "having it all"

Really enjoyed this essay on what it’s like to be a parent to a child with disabilities.  Sounds like our family’s definitely got it better than the author as Alex usually is quite good dealing with new situations (of course, when he’s not, it’s a disaster, but we still try often enough because it usually does work out.  Here’s a bit:

This is, sadly, a very typical exchange, not just with the experts in our lives, but even close friends: How do we stand our hellish life with a child who functions at 1 percent and starts to bite and hit when he is in situations he doesn’t understand — often, multiple times a day? Once, watching our son having a hard time, a friend even blurted, “I’m so glad this didn’t happen to us!”

While our friends worry about the quality of middle schools, our parental duties include bringing our son to the ER to get stitches after he puts his head through a window, then arranging for a window replacement and for a special treatment for all the glass in our house so it won’t shatter — at a pretty penny. Other friends declare, “I couldn’t do what you do.” If I am to conform to their expectations, I’m not sure what I am supposed to do: Beat my son? Kill myself? (Sadly, parents with kids like my son have done exactly that.)

Maybe it’s my Buddhist outlook, but I’m not consumed with worry and frenzy and despair like I’m “supposed” to be. I don’t enjoy that my 12-year-old son is still in diapers and sometimes purposely makes a mess in the bathroom. Or that he dumped his Thanksgiving dinner on my sister-in-law’s pregnant belly. Or that he screams in the parking lot of Whole Foods until people call the cops on us. On the other hand, he is my son, and he is what I have. And he has a nice smile.

When I look at friends and acquaintances, many with perfectly beautiful children and wonderful lives, and see how desperately unhappy or stressed they are about balancing work and family, I think to myself that the solution to many problems is deceptively obvious. We are chasing the wrong things, asking ourselves the wrong questions. It is not, “Can we have it all?” — with “all” being some kind of undefined marker that shall forever be moved upwards out of reach just a little bit with each new blessing. We should ask instead, “Do we have enough?”

I don’t think it is the Buddhist outlook.  The truth is, humans for the most part, are pretty amazing at dealing with what life throws them.  I like to think Kim and deal somewhat better than most.  But, truth is, most people who say some variation of “I don’t know how you do it” would probably do just fine themselves if it was them in our shoes.

Does Alex make life extra tough sometimes?  Hell, yeah.  But on the whole, we’ll take him.

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