Would we be okay?

Would Noah be okay? Would I be okay?

“Telling a special needs parent that they’ll get ‘through this’ is a lie,” wrote special needs mom & blogger Amy Mattson. “There is no light at the end of the tunnel here in this life.”

Amy Mattson’s blog post “No, Actually I Won’t ‘Get Through’ This. The Hard Truth of Special Needs Parenting”, is an honest, raw and Christian perspective on her personal experience as a special needs parent. To be fair, much of her blog (found at https://raisingtheextraordinary.com/special-needs-parenting-truth/ was uplifting and Christ-centered, but the words above, stuck with me all day. It is absolutely true that the individuals with special needs never get a break from their disability, never feel what its like to be “normal”. However, its also true that special needs parents also never emotionally get a break from the disability that invades their family and their loved one. They too never again feel what its like to be “normal”.

It started with a school alert text message on Sunday afternoon. School would be closed for inclement weather. Immediately my mind raced. Would Noah be okay? Did I have to go in to work? Did we have help tomorrow? Would Noah be okay? Could our aide come in earlier to help shepherd his day? Could she come in the morning so I might actually get some sleep for once? Would Noah be okay? Could I handle Noah all day, while still recovering from a double ear infection and sinus infection? Do we have enough of Noah’s favorite foods? WOULD NOAH BE OKAY?

I’ve read that more than a few special needs parents suffer from PTSD (Post Traumatic Stress Disorder). A recent article from PsychologyToday.com estimates that parents of kids with special needs are two to three times more likely to have anxiety & depression. We are also far more likely to feel isolated and lack meaningful friendships. Parents of kids with special needs are constantly reminded that their child doesn’t fit the template of society. We are constantly the outlier, the outcast, the variable and the unaccounted for.. and we are easily identified (if we’re identified at all) as “special” – something that often feels like a Scarlet Letter. Normalcy & rebellion become the competing fantasies when reality has become a withering, glaring, burning spotlight that you can’t shrink from without mentally checking out.

This week has been brutal. The anxiety has felt inescapably suffocating at times, while other times nearly manic with frenetic energy & pulsating chronic pain. I vividly remember the innumerable times his routine was jackknifed, and our uneasy tightrope of life was steamrolled by his traumatic behaviors. Truth is, his behaviors are mostly under control now.. mostly. That rational truth holds no sway over my reactionary anxiety. So, yes.. Noah would be okay. For me, I don’t often ask a different question that is honestly more important these days. Would I be okay? I have no choice.