Minimal Bandwidth

Will your newborn exclusively breastfeed for at least the first 6 months of their life?
Does your baby eat homemade, organic baby food, or do you prefer they get their daily arsenic serving from a glass jar of death?
Will your 3 year old’s speech ever be understood by anyone other than yourself and your spouse?
Do you pollute your 6 year old’s fragile brain with SCREEN TIME?
Have you made the decision about when to get your child a cell phone?
When do you plan to allow your child to stay home by themselves while you run an errand?

Too. Much.

Living in Crisis Mode

These are the parenting questions we are faced with every day. But for some of us living in a fog of worst-case scenarios with a medically complex child, we just don’t have the bandwidth to process (or frankly care about) any of these “dire decisions.” Don’t get me wrong – it’s not that my kid’s speech impediment isn’t important. And leaving my kid on their own at home for the first time isn’t insignificant, either.

Suddenly there is a vast divide between you and the general public. Your perspective has shifted. Your bar has lowered. You find yourself saying gems like “all bleeding stops eventually” and “I don’t want to hear about it unless someone is unconscious or not breathing.”

You sit in emergency departments seeking answers you’ll never find.
You talk to specialists who defer to you when it comes to knowledge of your child’s disorder.
You run to daily therapy visits that appear to do virtually nothing except complicate your own life.
You sit through emotionally draining IEP meetings, playing mediator between teachers and administrators while simultaneously advocating for your child.
You hide your child away from public life, partially to keep them safe from prying eyes, but primarily to avoid all the stares and constant questions.

You find yourself comforting other people, sometimes perfect strangers, about your own child’s diagnosis and prognosis.

We are not “uninvolved parents.” On the contrary, we only *wish* we were capable of worrying and second-guessing our parenting decisions like normal human beings.