In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie. The point of said blog hop? To get bloggers, such as myself, to write posts specific to issues surrounding disability. To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form. So here are my thoughts on the second prompt, which is:
Coming to Terms With Disability
In my experience, “coming to terms with disability” is circular, not linear. I don’t feel there will ever be a time in my life when I have “come to terms” with disability and no longer wrestle with various aspects of it. My journey has been extremely circular. I struggle, I grieve, I work through issues, I am content, something else happens, I struggle, I grieve, I work through more issues, I am once again content, and the cycle continues.
“You do what you gotta do…”
When it comes to dealing with a disability, at the end of the day, whether in a season of struggle, grief, or contentment, you do what you gotta do.
Last weekend we were camping with my sister and her family. We decided to go out for dinner one night. We chose a nice, family restaurant (with eight boys you’ve gotta go family friendly!) and sat down. Thankfully, spaghetti was on the menu. Jake is such a picky eater that we regularly order spaghetti if we are out, because we know it is his go-to meal.
Everyone ordered their food, and we waited for what seemed to be an inordinate amount of time, considering it was approaching 7:30pm and the kids were starving and hangry (for those of you who have never heard the term “hangry”, it is when you get so hungry that you become angry!) Finally, the food came. I was at one end of the table with Cole, and my husband was at the other end with Jake. The waitress handed him the spaghetti, and he began to cut it up, putting half of it into a bowl for Cole and leaving the other half for Jake. And that is when all hell broke loose.
We don’t know why, but Jake would NOT eat the spaghetti. He screamed. He cried. He whined. He complained. “Spaghetti, spaghetti”, he exclaimed over and over again, but would not actually take a bite. My husband was beside himself trying to figure out what went wrong and how to fix it so that he would eat dinner. He probably spent about half an hour trying to coax Jake into taking a bite. Jake’s lack of reasoning abilities, slower comprehension, and inability to express himself verbally brought his disability to the forefront in that moment. It climaxed with a temper tantrum, at which point he actually took him out of the restaurant. When he brought him back in a few minutes later, Jake slumped into his chair, clearly mad at the world (and probably starving) but still would not eat. Then, for whatever reason, he licked the spoon. He stopped, thought about it, licked it again, and then out of nowhere, picked up the spoon, dug into the spaghetti, and dug in ravenously. He did not stop until the whole bowl was finished.
At one point, my brother-in-law leaned over to my husband and told him that he didn’t know anyone else who would have had the patience to be able to handle that situation. While I think that is a testament to my very patient, amazingly understanding husband, it also struck a chord with me. We were debriefing the incident later, trying to figure out what prompted it and how we could avoid it in the future, and saying how frustrating the ordeal was. But, at the end of the day, we decided that Curtis just did what he had to do to mitigate the situation.
Whether it is having some sort of supernatural patience that allows you to work through issues that arise, whether it is driving your kid around in the car for an hour because he will not fall asleep when we are camping unless we are driving around, or whether it is taking your kid to countless appointments, specialists, and early intervention to help your child grow and develop, at the end of the day, coming to terms with disability means that you do what you gotta do.
Sometimes you don’t like it. Sometimes it’s hard. Sometimes it hurts. And sometimes, the disability disappears as you see your kid for who they are, and there are countless moments of joy, celebration, and normalcy. And just when you think you’ve come to terms, you’ve made it, you’ve arrived, another incident occurs, and the cycle continues! So for me, coming to terms with disability is an hourly, daily, weekly process, as I continue to learn that…
“You do what you gotta do…”