What I Learned from My Son’s Seizure on Christmas Day

It was admittedly a comparatively small one–the potent medicine Edgar takes all but guarantees (as much as anything can) that the big seizures will be kept forcibly at bay.  But it was a generalized seizure.  On his grandparents’ couch on Christmas Day as he was unwrapping one of his new favorite toys. 

And for the seconds it was happening, the world stood still. 

Though our threshold for seizures has, as Edgar’s neurologist predicted, grown exponentially, there was something about this one infiltrating the sanctity of a six-year-old child’s Christmas. 

It was a moment we couldn’t photograph, a memory we might like to forget.  Except we can’t. 

It’s ours.  And it’s his. 

And it reminded me that as much as we might like script and plan, we can’t.  Whether we’re parents or not, parents of children with special needs or not, so much of this all is beyond our control.  The only thing we can control is how we react. 

Did I know this before yesterday?  Most definitely.  Our journey to and through parenthood taught and continues to teach me that lesson regularly. 

But Edgar’s seizure taught me something else yesterday.  All the trappings, all the traditions, all the consistency in this world that we’ve created for our children is at the mercy of Edgar’s epilepsy, and nothing will ever be the same again.  Is it better that Edgar–with his diagnosis–dwell in a world of relative predictability.  I think so.  And is our world better because of him?  I know so. 

There will never be a day when we won’t have to think about Edgar’s epilepsy.  And it was naive of me to think that we might get a day off for Christmas.  But I am learning–and lucky me I have such a wise and beautiful teacher.

 

 

 

 

 

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11 thoughts on “What I Learned from My Son’s Seizure on Christmas Day

  1. I just stumbled across your blog and am so sorry to read this. It is scary and hard enough to have a child that experiences seizures but on Christmas, while opening presents. Oh how awful. My 5 year old son, who was born very early at 26 weeks, suffers from seizures. He went two years without a single one and we had just about allowed ourselves to forget and then this year. He has been averaging one every couple months which in the grand scheme of things is pretty good – especially since they have all been associated with fever. It is hard, always waiting for the next one. Hugs to you and your family.

    • Thank you for your kind words. It does seem as though we’re perpetually in a state of waiting. My best to you and your son.

  2. No moments off, the anticipation, the anxiety always looms; however, Edgar is in the most ideal family. He’s buffeted by brothers who balance the concern, and accepted him as he is, without conditions.
    He couldn’t be loved more nor cared for and about better.
    None of us know what we will grow into or experience as we grow and in that regard Edgar has a head start on individuality, and though his needs require more attention, who he is, how he charms, what he says, balance the concern with awe–thanks to you and Don.
    Peace,
    len

  3. So sorry you had to deal with this on Christmas but as you say this is your new reality–but doesn’t make it easy or fair…and yet through all of this you and your family come through with added grace and deepened, almost breathtaking, love– your writing also gets better and better with each new story. All the very best to you guys as we put 2011 behind us. Love to you all!

  4. There is so much LOVE in your words and thoughts. The children are thriving, having you and Don as their chosen parents. Having a child with special needs can be daunting for all of you and Edgar will rise above all the adversities that are placed before him because of your LOVE!

    • Thank you. Edgar had a grand mal seizure yesterday; so he had bloodwork this morning prior to his medication–and now we wait. Hoping his doctor can get the medicine where it needs to be–and soon.

  5. This is so true. My youngest, Squirt, experienced her first seizures just a few weeks before Christmas this year. And honestly? My best Christmas present was simply having her well and home. They don’t think she is epileptic; they think she might have hypoglycemia, as a result of previous malnutrition (adopted six months ago) or perhaps just because. Only time will tell. The complication is that she seizes when she drops into the low sixties, high fifties instead of in the twenties or thirties as most others do.

    My heart goes out to your family, especially your son. Seizures are a difficult thing to deal with, especially when caused by epilepsy (my sister has epilepsy). Thank the Lord Edgar has such wonderful, proactive parents.

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