What I want to be: Her Mom. Just her Mom.
What I am:
I am the “holder downer” when the needle pierces her vein as she gets blood drawn. Again
I am the appointment scheduler for all of the myriad specialists.
I am the one that drives her toward the “owies”.
I am the tear wiper and the hand holder.
I am the one who tries, but fails, to keep the panic out of my voice as I reassure her when the seizure hits.
I am the one who calls the insurance company when they suddenly won’t approve the medication that she needs.
I am the one that propels her in to all of the therapy appointments and specialist appointments.
I am the one that evades the question “will it hurt?”
I am the one that lies next to her in a hospital bed when she’s literally tethered to the machines.
I am the one who puts my mouth on hers, not to kiss her good night the way a Mom should, but to breathe air into her lungs when her body can’t do it for itself.
I am the one who shoots a dirty look at the IV nurse who just missed for the fifth time.
I am the one who will hold my ground against a doctor who thinks he knows her after 5 minutes of shining a light in her eye and tapping her knees.
I am the one who can’t let the tears fall.
I am the one who holds her down on the table as she screams because the anesthesia for yet another test burns.
I am the one shouting at the anesthesiologist that she is not supposed to have that anesthesia because it decelerated her heart rate previously.
I am the one who can recite her medical record- hospitalization dates, failed medications and their dosages, previous side effects, diagnosis, list of doctors, phone numbers, seizure frequency- by rote.
I am the one who yells “Are you ok?” Every time there’s a loud noise in the house.
I am the one who sees the gap between her and her peers ever widen.
I am the one who reads specialist reports and wishes they focused more on what she can do than can’t.
I am the one that sits in the IEP meeting fighting for more services to try to close that gap.
I am the one trying to prove that she’s worth fighting for when really it should just be known.
I am the one who can’t sleep because of the fears no one wants to talk about.
I am the one who says a prayer every time I touch her bedroom doorknob that when I open it I won’t find a dead child.
I am the one who will lie next to her watching her breathe, grateful for every breath that she doesn’t have to fight for.
I am the one who spends hours every day working toward safe, consistent, legal access to the cannabis that could be her miracle.
I am the one who feels like a failure even though it’s our government failing her.
I am the one who saw my child emerge from her zombie like state.
I am the one who marvels at a gleam in her eye that was never there before.
I am the one who stops in my tracks at every new word.
I am the one whose heart fills with love and pride when after a night full of seizures my girl gets up and goes to school.
I am the one who caught her breath the day that she carried her own backpack after months of being too weak to do it.
I don’t want to be her nurse, her therapist, her teacher, her lab tech, her personal scheduler.
I just want to be her Mom.
What I am- much more than a Mom