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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15 Responses to Reality Can Blow Me

  • becky says:

    When I read about all y’all’s struggles with V and all her seizures I just sit here with such admiration. Your patience amazes me. It truly does. I really hope this med situation gets sorted out TODAY.

    Jenn Reply:

    @becky,
    It always makes me laugh when people use the word ‘patience’ to describe me. If you heard me on the phone demanding answers and action NOW you would know that patience is not one of my virtues. At all. lol

  • Lisa says:

    Great, big, giant squishy hugs, mama. I wish I could do more.

  • you are such an incredible mother… every single day.

  • Michelle P. says:

    Damn Jenn, you get no breaks. Hugs, hope you figure it out today. But what a rotten way to spend your day.

  • beth says:

    I so get it. And I am here. ((Hugs))

    Jenn Reply:

    @beth,

    *sigh* I know you get it. In spades. And I so wish you didn’t.
    It’s membership in a club it sucks to belong to.

  • Chibi Jeebs says:

    Oh, dear heart. :( I wish I were closer and could squish you tight. I can’t imagine that grieving process (but can totally understand where you’re coming from). Love you tons.

    Jenn Reply:

    @Chibi Jeebs,
    Thanks sweetie.
    One of these days I’m going to take a road trip and just show up on your doorstep ;-)

  • Heather says:

    Hi.

    There are days when grieving is the only way you can function. It’s true. There are days when the only thing keeping you from jumping off the ledge is dreaming about what could’ve been. But slowly and gently…those ledgy-y days become further and further apart.

    And, you have friends who love you and ache with you.
    xoxoxo

    Jenn Reply:

    @Heather,

    Yeah, I just hate those days. They are coming fewer and further apart, but when they hit, they hit like a ton of bricks. And it sucks. And I know you get that. It’ll be nice when I can move past the ‘what ifs’. Maybe by the time she moves out. ;-)

  • Reality is a mother fucker.
    I am always amazed at how strong you are, and my heart goes out to you.
    Big cyber hugs.

  • punkinmama says:

    I’m so sorry Jenn! That totally blows! And I can not wrap my head around the fact that the pharmacy didn’t even tell you. Surely they know it’s dangerous to just switch the brand on this type of med. I hope you get it all figured out soon and praying that V won’t react negatively to the new brand! (((HUGS)))

  • Deidra23 says:

    I hate your pharmacist more every day.

  • toywithme says:

    First off, shocked & pissed off that the pharmacy would not know changing her meds is life threatening. Thank Jebus that you are a proactive mother who questioned their choice.

    You are an incredible woman in my eyes. Raising a child is very difficult without the added daily worry you must face when your beautiful, most precious little one requires extra special care. I’m sorry you’re having such a frustrating time right now, but chin up lovely lady, remember you are surrounded by friends who care and will help in any way.

    Great big squishy boob hugs coming your way :)

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