As summer began, my four young children were battling random infectious illnesses, and we had not left the house in days.
So, the question was: will Betsy lose her ever-loving mind?
Answer: not yet.
We are still hanging in there, folks, despite a hard-fought and not-so-glorious battle with hand, foot and mouth disease. My 15-month-old and 3-year-old had the terrible mouth sores and itchy rash on their hands and feet, and it lasted a bazillion trillion years.
But we got through it, and now all that remains are faded red spots, along with my enormous sleep deficit (which has been growing since 2005).
So… now what? The kids are all well and ready for summer fun, and…I have no idea how to make this happen.
Those of you who have kids with special needs, maybe you can relate? I will be honest, I am desperate for somebody to relate, because it is hard–summer can be so, so hard–when you have a kid who who desperately needs routine and structure, and summer is anything but.
My oldest, my 8-year-old, has a cognitive disability resulting from a rare chromosome disorder. He is such an awesome kid, a blessing to our family–he is a million wonderful things, and more. But parenting him is the most challenging thing I have ever done, and summer reminds me of how lost I sometimes (often!) feel while doing it.
It can be very lonely and isolating, especially when I see the pictures on Facebook–photos of families riding their bikes on the Tammany Trace or spending lazy afternoons in the pool. I see them enjoying beach vacations and trips to the zoo.
You know, normal things.
It’s the worst, when I allow space for the envy to set in, when I entertain the jealousy over “normal” families.
I imagine the things WE might do, how we would spend our summer…if we were a normal family. And oh, the guilt! I know, we all feel it–welcome to motherhood, here’s a nice, warm cup of GUILT–but it’s especially biting when I imagine that other life, the life without disability. It’s funny, because in those daydreams, the ones where we spend carefree afternoons on the beach, my son is there. Of course he’s there, because I can’t imagine a life without him in it. And yet, I can’t imagine him without his disability.
It doesn’t make any sense. I just want it to be easier. I want to feel competent. I want to leave the house with all four of my children without feeling like somebody set my hair on fire.
This is probably not going to happen.
I cause myself a lot of anxiety by wondering–what will my children remember about this summer? Will they remember cabin fever after hours cooped up in our small house? Will they remember a mother with a short temper? Will they remember a million popsicles on the back porch, and how they spotted bunnies in our front yard and had breakfast picnics in their treehouse? Will they remember how I gave middle of the night oatmeal baths, one after the other, when they were crazy with itching from hand, foot and mouth disease?
I hope they will look back and remember the things I got right, even if I have a hard time seeing them now.