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Extraordinary Measures

One thing I often want to tell parents of neurotypical, unbroken children is simply this: your lives are nothing like mine.

Another thing I want to tell them is this: your lives are just like mine.

It’s been a strange week for me as a father in that I haven’t seen Schuyler since last Tuesday, and won’t again until later today. She’s off with her mother, visiting the in-laws. I never feel quite right when I don’t see her. Schuyler is one of the people in my life who, when she’s not present, leaves a hole in me that is conspicuous in its emptiness. I like to not have those holes remain vacant for any longer than they must be.

This can be challenging, but as my days roll by in this life, I am reminded time and time again that the old song was right. “The greatest thing you’ll ever learn is just to love and be loved in return.” Schuyler is indeed a little shy and sad of eye. But very wise is she, and so I listen, and the lessons she teaches me resonate throughout my life, with all those whose presence is meaningful to me.

Since I’ve not been distracted by the act of actually parenting her, I’ve been thinking a great deal about what it means to be Schuyler’s father. More than that, I’ve considered what being a special needs parent really consists of. The thing that I return to again and again is how it’s not always so different from everyone else’s experience, except of course when it suddenly very much is. Those differences probably resonate with other parents in a way that must make our lives feel very separate. For us, however, in the midst of our lives, the lines blur, the experiences feel the same, and the moments where disability drives our decisions and actions feel no different from the rest.

I had the opportunity to watch an extraordinary special needs mother this week as she made her way in the world with her kids. Perhaps it’s because I’ve been raising a daughter with a largely invisible disability, but the part that surprised me the most was the freedom that perfect strangers felt in coming up to this mother and expressing their admiring disbelief in the work that she was engaged in, and the unusual strength from which she must have drawn to successfully navigate her world with such a challenging situation. It’s the thing we’ve all heard before, those of us with kids who are different.

“You must be such an amazing person. I could never do what you do.”

I guess it feels like a compliment. I get that. It certainly dresses like one. But it supposes that because she, or any of us, is such a unique and strong parent, we are the ones who will take care of the afflicted among us. We are the chosen ones, the parents to whom God has given no more than we can handle, the heroes who take extraordinary measures every day to make things right. And as long as we are on the job, the rest of the world may continue without troubling itself too much. No need to go into the slums of Calcutta if Mother Theresa has it covered. The cops don’t bother trying to arrest Lex Luthor. That’s someone else’s job.

But we’re not special. And frankly, God can be a real butthole when it comes to giving us more than we can handle. We don’t do it because we’ve been endowed with special powers, because we very much haven’t. And we don’t just do it because they’re our kids (because in many cases they don’t start off as ours, after all) and if we don’t take care of them and help them flourish, who will? That part might be true, but it’s not the reason.

We do it because we love our children. That may sound simplistic and perhaps a touch Hallmarky, but it’s the simple truth. We love our kids, not as projects or duties. We love them because, well, for the same reasons anyone loves anyone else. In loving them, we recognize their intrinsic value as human beings. And society doesn’t get a pass on that just because we’re taking care of them. As citizens of the world and children of God, we all have that responsibility. When you look at us and say that you could never care for a child like ours, not only are you probably wrong about that, but you’re not off the hook. You’re part of the village.

When Schuyler comes back to me today, I’ll pick up the threads of my life with her, and I’ll do so because it is my extreme privilege and pleasure to do so.

——-

Please visit Build-A-Bear Workshop’s blog where site co-founder is telling her daughter’s story

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