I’m a mom who cries during the private meeting with a pediatrician, demands answers, refuses to accept being blown off, researches everything, and will not stop pushing back when I feel in my gut something more needs to be done. And I’m a mom who walked out of that office today with 2 referrals to specialists and an order for more thorough lab work.
It is never easy. In fact, it’s excruciatingly hard sometimes. It takes a depth of perseverance and tenacity that cannot be understood by others not on this journey. I could never have come close to imagining this life beforehand. Yet, similar stories of having to be a warrior are the norm in the disability community.
I share this to encourage other caregivers, parents, and advocates. I know this fight is hard. Keep speaking up in every way possible. When one or even twenty-seven professionals dismiss your concerns, I know how frustrating that is. Rage. Cry. Rest. Recharge. Regroup. Be prepared. You know your child. Often I feel lost, wondering if I’m on the right track or if I’ve veered way off course. I crumble. I wish for it to be different, less challenging to find the right support. Maybe all this work will have a greater impact than I can imagine. The point of it all is to have the best quality of life.
No matter what, for as long as I draw breath, I will carry on for her. And with me I’ll have my bag of files, research papers, and a spiral notebook full of questions. Sometimes over-preparedness due to anxiety can be a superpower. I’ve learned strength can come in many forms of expression. I may not be popular, but I know I’m on the right side of things.
