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Let’s Talk About the Weather

Jamie Sumner
Special needs mom, author and blogger
02/27/19  1:23 PM PST
Weather

The first topic in dinner party conversation is the weather. It’s easy and safe and vague and everybody has an opinion. Except, I don’t attend dinner parties so very much, so let’s shift that to the exchanges over the cash register with the check-out lady at Target.

It usually goes something like this:

“How about that weather, huh?”

And then the co-conversant responds with appropriate delight or dismay or, better yet, one or both of you will pull up the ten-day forecast on your phone and discuss your future in wistful or woeful terms. 

Well, today I want to talk about the weather for real. Because for my son Charlie, who has cerebral palsy and is in a wheelchair, weather is not just an ice-breaker among strangers. It dictates every aspect of his day.

He has light sensitivities, you see, and so those extraordinarily brilliant sunshiney summer days are his worst nightmare. He squints and ducks and avoids the handicapped swing (his most favorite thing in the park) in favor of the shade. We’ve tried sunglasses. He pulls them off. Even the ones with back straps. We’ve tried hats. He pulls them off. Even the ones with chin straps. Between the sun and the heat, he’s happier to be left inside with a book. Which is fine by me, except he has siblings who need airing out and whether he likes it or not, so does he. So I have become that lady in the park with the umbrella. I am Mary Poppins in flip flops. My umbrella has the face and tail of a fox—the best purchase from the zoo I have ever made. It works and it’s wonderful and it gives us all a UV break.

But we are not in the sunshiney season yet. We are in, perhaps the worst season of all, the rainy season. It might still be snowing where you are, but as NPR told me recently, 2018 was the wettest year in history for us in Tennessee and for many other states. And 2019 is turning out much the same. Forget playgrounds or parks or even strolls in the neighborhood. Everything is in a state of wetness—either in the process of drying or the process of dampening. Everyone’s shoes and jackets need Febreezing. Our lives need Febreezing.

We can handle the sun and the snow. The snow, actually, is Charlie’s favorite thing. He loves the biting cold and the wind and the flakes that land on his nose and (magic of all magics!) disappear. He loves the frozen branches that crackle and he loves to look back and see the tracks of his wheels down the sidewalk. It’s an absolute terror for me, of course, because a runaway wheelchair on the ice is my worst nightmare. And if I slipped or got a sprained ankle or a pulled back, that would put the whole family out of commission. I am the chauffeur of Charlie’s body. I am the lifter and the dresser and the driver and the bather and to lose that functionality would be crippling for all of us. But this does not change Charlie’s love affair with the snow.

The rain, however, we both agree, is the worst. Because the umbrella in the sun in summer is perfect. It provides the shade and the hint of coolness to make the outside manageable. But, surprisingly, the umbrella in the rain is not quite as effective. There is no way to keep us both dry and push the wheelchair. And also, where would we go? The park is slippery and dangerous for Charlie’s siblings. Nobody needs to be navigating those monkey bars in the rain. And every single entrance, whether that be to McDonald’s, the mall, my beloved Target, is so wet that it’s like steering him over an ice-skating rink. Actually, we’ve done the ice-skating rink in his wheelchair. That was easier.

So in this wettest season of this wettest year, we are staying in. We are reading a lot of books and taking very long baths and making homemade pizzas so that everyone can participate in dinner. And we will wait it out until spring. But if you do happen to see me at Target in the near future, whatever you do, don’t bring up the weather.

special needs parents

Jamie Sumner is a special needs mom, author and blogger.

Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.

Read her blog, The Mom Gene.

Follow her on Facebook.

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