From Mom to Drug Dealing Monster Slayer

pop

slide

swallow

hope.

pop

slide

place

hope.

wrestle

slide

toss

swallow

hope.

 

Tiny Red Boots in a tube.

My nightly routine of taking a low dose of anti-anxiety/depression medication always ends with hope. Hope that these little pills which feel a little magic will soothe my mind and fortify my spirit.

A few years ago I started wearing fire-engine red hunter wellies. They made me feel like I could handle things. They did the walking for me when I felt that I couldn’t take. another. step. (this site is named after those red boots and what they have meant to me)

 

Friendly neighborhood drug taking, drug dealing, soon drug smuggling (legally) mom.

The multiple times a day routine of pushing drugs on my daughter. Heavy-duty anti-seizure meds that do as much harm as good.

Valproic Acid. Keppra. Clobazam. Ativan.

Sprinkle in some Cannabis CBD oil for good measure and some stool softener.

Drugs, 3 times per day for my daughter, check!

Food, daily g-tube feedings 5-8 times a day, regular feedings 3 times, Check!

Fingers crossed, hopeful that we’ll be one of those families in a video that goes viral talking about how our daughter’s monster was slain and she can walk again, talk for the first time, and regained some of the use of her hands.

See? Hope — it’s nearly a religion at our house these days.

Meds for my daughter are a necessity. They help reduce seizures. For me, Meds help me stay out of the cracks my brain falls into when I forget to take them.

I didn’t need them BR (Before Rett Syndrome).

Will they become like oxygen, something I can’t live without? Hope my doctor gets that referral in soon; all my follow-up and muscle-in is reserved for my daughter’s needs; I need to make sure I don’t run out of follow-up or muscle-in for her.

Drugs are at once my aid and my crutch, with them I am armed against the monster named Rett.


And I wonder: will the day come when I have shaped my brain and my nervous system in all the ways that are needed to stop seeing monsters.


 

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