Happy Seizure Anniversary

11 Dec

Seven years ago this month, Maura had her first visible seizure.

It was on horseback, because we can’t do anything normally in this household.  Oh no, we must always go above and beyond expectations.

This all hit me yesterday as I was giving my history to my new chiropractor – how half my pain and injury is caused by wear and tear from handling Maura, then about Maura, and then about how Maura has epilepsy, which evolved into “Oh yeah, it was seven  years this month…she was on horseback…you know, because we must do everything with our own special flair – and that basically sums up my life right there!”

Yes, I really did say that.  Because it really does sum up my life.

“Tell me about yourself!”  asks Innocent Victim

“Well, I have kids, one with special needs, she had a seizure on horseback.  That’s my life.” says the Madwoman holding a Starbucks.

What’s funny is that in all that weird hazy “Merry Christmas, your daughter has epilepsy” memory, there’s one part that sticks out in my mind.  I was there at the neurologist’s, with my brand new little purse.  I always loved it when my kids got old enough that I could get a little purse, and had bought myself a cute little orange and grey purse at Target.  That purse was sitting there next to me as the nurse practitioner handed me a box of daily medication, a thing of emergency medication, a black case to hold said emergency medication in, and a book about Childhood Seizure Disorders.

My brain wasn’t ready to wrap around the whole epilepsy thing – instead, it went straight to “Well crap.  I’m going to need a bigger purse.”

That’s how I ended up in this kitschy little store one night during the holiday shopping season, on the night the block of stores decided to throw a festive “come shop with us” night.  I walked in and thought I had stumbled into a private party, as people were mulling about holding glasses of wine.  No, it was just how the shop owner greeted everyone that night.

The shop owner asked what I was looking for – I said a purse.  She asked if it was for someone else or myself. When I said myself, she said “Wonderful!”

I then pulled out the black case for the emergency medication and said “I need something that this will fit into.”

I eventually found The Right Purse – it was big enough to hold everything I needed, and it was cute.  With two little birds stitched onto it, it gave me that bit of whimsy to see me through this new diagnosis.

It was a total splurge at the time, that purse.  But I needed it.  And it ended up serving me quite well – it held that necessary black case full of emergency medication, diapers, wipes, wallet, knitting, dolls, cars, snacks, books – anything I could throw into it, and maybe a few things I shouldn’t have.  All while looking adorable.

I haven’t really used that bag in the past couple of years.  But I still have it.  And it still looks great, my little birdie bag.  Right now, I can’t get rid of it, even though I don’t use it.  That bag and I have been through a lot these past seven years.

I guess that’s how I could sum my life up – “My daughter had her first seizure on horseback, was diagnosed with epilepsy, so I bought a cute bag – cause that’s how we roll.”

Yep.  That sounds about right.

My little birdie bag

My little birdie bag

Note – if you like the purse, or need a happy bag to carry all your gear in, I highly recommend it.  It can be found at Queen Bee Creations, and I can honestly say that it will last you years!

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6 Responses to “Happy Seizure Anniversary”

  1. Grainne December 11, 2013 at 3:55 pm #

    What a wonderfully charming story of a frightful time in your life as a mom to your beautiful girl. I have a similar story and a similar bag purchased to carry around all of Colt’s medical records while we were still trying to figure out what was what. It’s amazing how life carries on isn’t it?

    You inspire me often. Just wanted you to know.

  2. saracvt December 11, 2013 at 3:56 pm #

    Must just be something about parents of child epileptics–they remember the anniversaries (!) while WE remember it mainly as a funny story but not exactly when.

    MY first seizure (juvenile onset; idiopathic) occurred while I was reading on the living room sofa. My father called 911, as properly he should, and that was when the chaos really started.

    He carried me, no longer convulsing but still unconscious, out onto the porch to await paramedics. When they arrived, several eager hands reached out to take me, a teenager, into an ambulance.

    My father unexpectedly knocked them into the bushes. He then declared in an excess of paternal panic that no one, NO ONE, was taking his baby girl away from him.

    Meanwhile, the remaining conscious paramedic had called the cops.

    I eventually traveled, still unconscious, to the hospital, in the police car. I was wedged in the back seat, where I lost a shoe (I bring this up for a reason).

    At the ER, I finally regained consciousness. I noticed, without much interest, that I had lost a shoe. I thought that it was all a particularly strange, very vivid dream, because I had I had never had a seizure before and no frame for waking up somewhere else. I remembered the living room sofa as the last place I’d been and thought I must have taken a nap.

    The attending doctor, after giving me a drink of water (the inside of your mouth always tastes HORRIBLE after) asked me to get up and walk. Remember, I’m only wearing one shoe. He said, I swear to God, “How long have you had this limp?”

    So I think all first seizures are chaotic things, by definition. That’s how epileptics roll.

    • phoebz4 December 11, 2013 at 4:05 pm #

      LOL at the limp part. Oy!

      I do find it a bit hilarious that Maura had hers on horseback. Even better – where I was sitting, in the viewing room, I didn’t think too much was wrong. They’d had her sit sideways and backwards on the horse, why not lay down? I was on the phone with a friend and said “Well, that’s weird…” It was only when they sat her up, then turned the horse around and brought her out of the arena with 15 minutes left of therapy that I realized something else was going on.

      Oh, and for the complete record – the therapist carried her in, all grey and limp, and said “Does she have a history of seizures?” and I’m pretty sure my answer was “Oh shit…no…” LOL!

  3. Joy M. Newcom December 11, 2013 at 5:30 pm #

    I have a white hospital sheet folded into a small rectangle and taped with white hospital tape that I can’t get rid of. The head labor nurse made it and handed it to me after my cesarean for a short (2-block) ambulance ride to the hospital where my son was being taken – in his own ambulance – for the first two surgeries of his life: ostomy and closure of his spine. I still remember what she said: “It’s still too early for you to feel your abdomen or feet, but I want to give this to you, just in case. Hold tightly to it and press it against your incision if the ride gets bumpy.” Indeed. It’s been 22 years.

  4. michellegilstrap December 11, 2013 at 5:56 pm #

    I so enjoy how you remember things. I helps all of us to know we are normal. Strange things spark memories. Smells, A sight of certain bird a cloud formation, different visuals or music will bring a tear to my eye remembering my Mom or my Dad and those medical emergencies we went through. I have had my own as well with my daughter and myself. Just know that God doesn’t give us more than we can bear, just enough to make us strong. I have wondered why when I have sat in the ER with different diagnosis but each time, I come through the crisis, I am stronger. Love brings us through everything.

  5. lifeofawillow December 11, 2013 at 11:04 pm #

    Such a positive spin. Power on!!

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