Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles." 
 ~ Christopher Reeves


Eleven years of seizures

Posted by haleyismyhero on January 29, 2012 at 7:20 PM

January 29th is a day that will forever live on in our lives as the day that things changed.  At the time we had no idea.  Eleven years ago today my husband and I along with Haley had spent the greater part of the day shopping at Home Depot.  We were looking for lighting fixtures for the house we were remodeling and would soon to move into.  We got home late in the day and I was preparing dinner and Bobby had Haley lying on his chest wearing her pink Osh Kosh overall with yellow duckies.  The ones with the yellow bow on the back and she had on a yellow turtleneck and socks.  Funny we can remember it all so clearly.

 When I looked at Haley she appeared to be flushed, so got out the ear thermometer and one ear read 96.3 and the other ear 100.3.  I thought that was weird.  So to the changing table we went to get the rectal thermometer.  As I was taking her temperature, her eyes rolled back and she began convulsing.  I don't know how i knew, but I knew...she was having a seizure.  I immediately gathered up things and we headed off to the ER.  Living in a rural area, waiting for an ambulance means waiting for the volunteers to go to the ambulance and then try to locate you.  It was much, much quicker to take her on our own.  The rest of the evening was tests, blood draws, x-rays, etc.  We were fortunate to have our pediatrician already in the ER when we arrived to give us words of wisdom from a doctors point of view and even more important from a mom's point of view.  We left that night with a diagnosis of "febrile seizures" due to an ear infection.  I slept that night with Haley on my chest listening to lullabies by "Twin Sisters" recordings.

So here we are eleven years later.  It took six and half years to get the diagnosis of Dravet syndrome.  I look back over the years and think in some ways we were blessed to not know what Haley's condition was during the younger years.  We held out hope that one day, if we could stop the illnesses and reduce the seizures and get of the medications, then she would be "normal".  Back in those days, I did not want a label.  I wanted you to see my daughter.  I thought that "those" children in the Special Ed class were NOT her peers.  I tried in vain to help her learn and to move forward.  So then again, maybe it would have been easier had we known her true condition at an early age.  I know that we would have not tried some medications and then tried them again.  She would not have been so over medicated when she was five.  We would have persued therapies earlier.   Now I find myself wanting the labels in every color and size.  I adore "those" children in her special education class who give me hugs every morning and greet me as "mom".  

What does it do to think what I should have done or could have done??  I love the phrase that Dr. Wayne Dyer uses in his book, "The Power of Intention", "don't 'should of 'all over yourself"!  After all, if you should of then you would of, right?  We will move forward from this day and continue on our Dravet journey along side of many other brave moms and dads.  This definitely was not the life I imagined for myself and I would not sign up for it.  However, I am so richly blessed by experiencing it.

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1 Comment

Reply Michelle @Special Mom Space
4:32 PM on January 31, 2012 
First, let me say Haley is beautiful! Second, I understand what you're going through and I too am blessed.

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