Confession time

25 Jul

I’m just going to come out and say it -

I hate the thought of losing the epilepsy diagnosis.

Yes, I know, I should be grateful that Maura’s brain isn’t showing signs of seizure activity.  I am happy that so far, the weaning process is going great.  I am happy that every day, I see my daughter being happy and bright and healthy, not losing any skills or balance.  In fact, I’m beginning to wonder if she is becoming more vocal actually.

But I hate the thought of losing the epilepsy label.

Why?

Because, in a way, it’s all we have.  It’s all we can say she has that people can grasp.  People hear “epilepsy” and know what that is, know how serious it can be.  It puts us at a different level.  It’s something seriously medical enough to get us that extra help. It’s a bit of street cred in the special needs world.  It’s something I can explain.  It’s the only thing in Maura’s list of symptoms that seems solid.

Having epilepsy makes Maura more worthy of the “special needs” label in the eyes.  No, really, it does. I remember when the one mother who gave me a hard time about Maura not being autistic and therefore our lives must be easier heard that Maura was having seizures – she treated me differently after that, with more sympathy.  It was a bit ridiculous that it took seizures to make Maura more special needs, but it did.

Granted, all that was several years ago.  Now when you meet her, you understand, she has something going on.

But something going on doesn’t get you any help.

I was hoping to get Maura on some sort of state disability benefit.  I’ve looked it all up, and one qualification is cognitive disabilities, but another is epilepsy.  I was banking on the epilepsy diagnosis to tip the scale in our benefit, to help her really qualify, and maybe get some respite care.  Now it feels like I’ve waited too long.

Don’t get me wrong – if Maura never has another seizure, that would be beyond awesome.  I would love to not worry over if each childhood illness will bring seizures with it, or exhaustion, to get over the constant constipation the medication helps cause.  I would love not to spend $513 a month as a co-pay for said medication, or cry if I spill a dose knowing how much it costs.  Yet the label it brought that made people take us more seriously – schools, doctors, other special needs parents. I hated what it did to my daughter every time one struck, I hate the anxiety that it puts me through, and I hate knowing that if we get her through this trial and she’s given the all-clear, I’m still going to have that worry every time she gets twitchy or blinky.

I’m realizing, I have Stockholm Syndrome with epilepsy.

It’s held us hostage, but it has been the devil we’ve known, and known what to do about.  It’s the thing that’s kept us under specialists routine care.  For all its negatives, epilepsy has also had a positive effect on our lives.  I know, that sounds weird, but it’s the truth.

I’ve forgotten what life is like without epilepsy.  I’m not sure what life will bring without it.

All that said – if she has a seizure as we wean her off these meds, I’ll probably cry in disappointment.  Because while I’ve grown comfortable with being epilepsy’s hostage, I want that freedom for my child.  I want that healthiness for her.  I want to see what her brain will manage without the seizure meds slowing it down a bit.

Whatever happens, we will manage.  We always do.  But sometimes, I just need to get thoughts out of my head, so I can keep moving forward.  As jumbled and mixed up and odd as they are, these are the thoughts in my head.  I don’t expect most people to understand, but to the one or two that do, thanks.  And I get you too!

 

Oh, the things I go through for this little face!

Oh, the things I go through for this little face!

 

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6 Responses to “Confession time”

  1. Meghan Huss July 25, 2014 at 2:07 pm #

    You should check with your neurologist, but Maura may not lose the “epilepsy” label even if she isn’t having seizures. My son had seizures as a baby, but then went almost 8 years seizure free, 6 of them with no seizure meds, and the doctors never removed the epilepsy from his list of diagnoses. It might help you to get her on the waiver list at least.

    • phoebz4 July 25, 2014 at 2:31 pm #

      good to know, I’ll check into that.

  2. Caroline Pollock July 25, 2014 at 5:02 pm #

    I am in awe of the strength you posses.

  3. myownbiblecomments July 25, 2014 at 8:44 pm #

    I get it. Love, Susan

  4. franhunne4u July 27, 2014 at 2:24 am #

    Of course I get it – epilepsy is the one thing that rings a bell when people hear about Maura’s illness. I hope your daughter can stay off the medication and will still be thought an epilepsy patient, albeit a “sleeping” one.

  5. Beth July 27, 2014 at 5:22 am #

    Totally get this Phoebe! I’ve been fighting to continue services for my adopted daughter with cognitive disabilities. The state we’ve relocated to doesn’t see her qualifying here (she apparently got smarter with the move!) so difficult to imagine her future without the support she deserves!

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