by Brittany Rosebrook
Just make the pizza.
I’m not talking about roll out the dough, spread the sauce pizza, I’m simply saying to turn on the oven, throw the frozen pizza in, and make sure it doesn’t burn.
Simple enough, right? It should be.
On a night where our six-year-old son needed to get to one of his activities, after finishing his homework and getting ready, all we had to do next was eat a simple and quick dinner—so, tonight became the famous pizza night.
My husband was taking care of Tanner, our two-year-old son who suffers from Alternating Hemiplegia and severe dystonia every day, among a laundry list of other complexities. He turned the oven on to preheat it, and threw the pizza in as I was getting our other son ready to go.
Dystonia decided it needed to make its nightly visit, and Tanner began breath holding, sweating, contorting, stiffening—and all the classic signs that a full body episode was again on its way. As I began rushing to complete the “getting ready” process with my son, I decided we weren’t going to have enough time to actually eat it, and so tonight quickly became turkey-sandwich-with-yogurt-and-veggies night for my older son.
Minutes before we absolutely had to get out the door to be at his activity on time, my husband asked, “Are you going to watch the pizza then so it doesn’t burn?”
“What??? NO!!! I have to get him to his activity!! You can’t WATCH a pizza to make sure it doesn’t burn!?”
And the answer, simply stated, but unspoken, was no.
He actually couldn’t make sure the simple frozen pizza in the oven for another 10 minutes (at most) wouldn’t burn. Dystonia took over our lives yet again, and the focus had to be on Tanner, and making sure he was going to get through this episode and still be breathing in the end. No, we weren’t going to eat the pizza for dinner that night, it just wasn’t possible, but at least our older son was fed dinner, and was still super excited for his activity.
The lessons of life, or should I say the reality of our lives, struck me hard after a few minutes in the car driving my other son to his activity. The distance I felt from the norm to our “norm” was a world away.
A frozen pizza. Who knew it could be so powerful? Simple, yet everyday thoughts, activities, and plans, are so different from everyone else we know, that it blows my mind at times, and yet, keeps me grounded and moving forward with a determination I never thought possible prior to Tanner entering our lives.
Once I left the house, I thought deeply about the entire situation. In the stressful moments of rushing to get my older son fed and out the door, I snapped at my husband with a thoughtless, “you can’t watch a pizza to make sure it doesn’t burn?” The answer is simply no when you are dealing with severe dystonia.
With that scenario, I’m left feeling even more grateful for every day that we all have together. I am grateful for my husband, who has never given up on our family, and works hard everyday to ensure I can stay home with our son and give him the best that I can. I am grateful for my older son, who is so adaptable it is amazing, to all of our family and friends who have supported us, who try their best to understand, and who would do anything to make our lives even the tiniest bit less complex.
I am grateful for Tanner, who suffers far more than most adults ever have in a lifetime on a daily basis, and yet he can still smile, he can laugh and make us laugh. He was perfectly placed in our family two years ago. Tanner has taught us more than we could have ever imagined, because of all of his complexities, and I am forever grateful for him. Though we have night nurses to take care of him while we sleep, though our days are filled with medications, therapies and appointments, and though everyday consists of us being doctor, nurse, and therapist, I cannot imagine a life without Tanner.
So with that said, who ever said you couldn’t eat pizza for dessert at 8:45 PM?
My older son got home from his activity, and that’s just what we did. Tanner was already soundly sleeping for the night, and so, when my son got home, the rest of us ate that pizza. Nobody lost a limb that day (as I always say for a good day), and we were still all here in our house together, grateful for another day, and even more grateful for things not getting worse medically for Tanner than they could have.
Though as stressful as those previous moments were, the pizza tasted just as good as it would have hours before.
And no, it was not burnt.