Healthcare is political. End of story. I don’t argue about, discuss it, or care to have my mind changed. I’m even less inclined to know your political tendencies. When you have a child with a chronic illness (or in Tommy’s case, illnesses) and autism to boot…it’s political. It doesn’t matter much which side of the aisle you sit on.
There are so many choices I didn’t get to make. I didn’t decide for Tommy to be sick. Among many diagnoses, he has hypogammaglobulinemia. Say that three times fast. It’s a suppression of the immune system. A seemingly innocuous infection one of us may have, may be life-threatening to Tommy. He takes antibiotics daily to try to prevent this. Normally, not that there’s anything normal about it, he could get IVIG transfusions; but both infusions Tommy got at 9 months old gave him meningitis; so scratch that. Cough around any one of us and watch us react like you have the bubonic plague. We simply can’t get sick in our house. James had strep throat this winter. We ALL did heavy rounds of antibiotics just to keep Tommy from getting it.
I also didn’t choose for Tommy to have a platelet disorder, or FPIES, or GI issues, or a sleeping disorder, or ASD. The list is longer, but you get the point. Not once have I resented any of what has come to us and what potentially awaits us. It is what it is.
What I do resent is someone making the decisions regarding who can be treated, by whom, and for how much. You can’t imagine the financial expense: ABA therapy, OT, medicine, feeding pumps, syringes, feeding bags, amino acid formula, leg braces, co-pays, hospitalizations, genetic testing, lost wages, sick time, high health insurance deductibles (don’t get me started on that one), supplemental insurance just for Tommy to cover what’s not covered by our primary insurance… it’s overwhelming. Yet, I’m thankful every single day that I am able to work to cover all of this. Not every mother (or father) has that option.
I’m also grateful that we live within 40 miles of the medical Mecca of the world. Not every family has that option, either.
When I was a kid, our elderly neighbor, Mr. Vaz, used to say to us “be thankful you have the money to pay the taxes.” At 7 years old I never knew what the hell he was talking about. If I could tell him anything today, I’d tell him that his advice from 1983 has carried me this far. I often wonder if he was being literal or figurative. Perhaps it was both. I just wish in 2019 parents didn’t have to worry about decisions that weren’t theirs to make by what seems like intangible decision makers. Kids don’t have the “money” to pay the “taxes,” folks, nor should they have to. Just let them be kids.
In the words of George H.W. Bush “read my lips, NO NEW TAXES!” I can’t afford it; literally and figuratively.