normalcy

Reality Can Blow Me

Every Wednesday morning, Vista and I jump into the truck and head down to the Parent Link centre in town for our weekly therapy group.

It’s an opportunity for her to connect with other kids and work on her social, motor, and sensory skills and it’s a chance for me to connect with other parents of special needs kids.

In the past month, we’ve added a bunch of new families to our group, as many of the kids from the spring group have moved on to preschool or kindergarten.

Many of these new parents are where we were two years ago.  No diagnosis.  No support.  Only the rock solid knowledge that there is something just not quite right with your child.

It’s a difficult place to be.  I know.  I remember.

With all the progress she’s made in the past few months, it’s easy to sit back and enjoy a sense of semi-normalcy.

Until, of course, reality butts in.

====================

We finished up V’s bottle of meds last night, so this morning I opened up the new bottle we had just picked up from the pharmacy.

I drew a syringe full and looked at it.  Hmmm…. that’s not right.  Vista’s meds are dark red.  This stuff is almost clear with a slight tinge of pink.  Was there water in the syringe that I hadn’t noticed?

I squirted the meds down the drain, grabbed a new syringe, checked that it was clean and dry, and tried again.

Still clear.

*shit*

I paced the kitchen waiting for the pharmacy to open.

Watching the clock.  Mentally calculating in my head how far I could push the delay in her meds and still leave enough time for 12hrs between her doses.

I finally got the pharmacist on the line.  And found out they had switched the brand of her meds.  They couldn’t get her normal ones, a problem at the source, no longer able to order the old brand, so they switched it to a new brand.

And. Didn’t. Tell. Us.

Shouldn’t be a big deal, right?  Only it is.

Each brand is formulated differently.

And that means switching brands in anti-seizure meds can be like yanking them off old meds and suddenly starting new meds.  Which?  Can cause major seizures.

I’ve spent the morning on the phone with pharmacies, trying to find someone who carries her old brand.

I have a call into our Neurology pharmacist asking what we should do.

I called our Neurology nurse and asked if she thought it might be OK just to go with the new brand (she confirmed that it was definitely NOT OK and that I needed to talk to the neuro pharmacist to see what he recommended).

I’m frustrated.

I’m angry.

My nerves and feelings are raw.

I’m back to grieving the child I thought I was going to have three years ago.  The one that was healthy.  The one that didn’t need three doses of anti-seizure meds every day to keep her alive.  The one that didn’t need therapy.  The one that didn’t know the inside of the children’s hospital like the back of her hand.

One day, maybe I’ll get to the end of that grieving process.  But not today.

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