The Hardest Word I’ve Ever Said

Seven years. Over a thousand hours at hospitals and specialist appointments. Countless interventions at home. And it turns out the most important word to help my daughter’s treatment is this:


No… we’re not doing a nineteenth round of medication adjustments. It’s time for hospitalization.

No… I won’t take her home from the hospital and keep doing the things that haven’t worked in the past.

No… I won’t take her home, period. She needs more help than we can give her. It’s time for residential placement.

No… We’re not going to let her case be assigned to an intern at your teaching facility.

No… No… No…

Why haven’t I said it – really said it – until this year? At first, because I trusted specialists more than my instincts. Then because… well, I still trusted specialists more than my instincts. I feared I’d cause my little girl more pain and suffering if I didn’t cross my t’s and dot my i’s. Or maybe I was just grieving and overwhelmed. Or afraid I’d “do it wrong.”

And now I’m done with that.

Saying no seems to be the biggest yes I can say for my daughter’s treatment, for her healing, for her future. It’s not comfortable to say it. It’s a little scary, actually, to look an MD/PhD in the face and say “No, I disagree.” But I’m doing it anyway. That one little word has brought more freedom to my family in a few months than years of yes ever did.

How are you doing with “no” these days? What hard words have you had to get comfy with as a special needs parent?


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