Epilepsy Sucks

I have always wanted to be a mom.  As far back as I can remember, I went through numerous “what I want to be when I grow up” phases, but they all included being a mommy.  On October 17, 2001, that dream came true. I had never before seen anything so beautiful as my son.  I then understood how much love the human “heart” could hold, infinity…  He was everything I’d always wanted and more.

When Kylar was six, he was diagnosed with asthma and we’ve had some problems throughout the years with it, but nothing extremely serious.  Just before that, he was diagnosed with ADHD; I think that is the biggest mistake I’ve made with him, at least medically.  I put him on what I now know to actually be just legalized methamphetamine.  Luckily a few years ago we put a stop to that, it never helped him in school and I felt like it was doing more harm to him.

About a year and a half ago, my husband and I started noticing strange things.  He would be talking to us with the usual non-stop speaking that he definitely inherited from me, when suddenly he would just stop and stare off.  This would usually last for only a few seconds, but any attempt to get his attention failed during this time.  Just two months later, and a trip to Nashville’s Vanderbilt Children’s Hospital, we had a diagnosis of epilepsy.  With his age at the time, it was unclear which type it was.  There is juvenile onset, which usually shows up around age six.  With this type, he is likely to actually “outgrow” it later.  Then there is the other type.  If he actually was just starting to show signs of it, then he most likely won’t outgrow it.  Right now he just has absence type of seizure, where he basically just isn’t there for a few seconds, I pray he never develops the full on grand mal seizures, but only time will tell that.

When he was diagnosed, the pediatric neurologist gave him a pinwheel;  you know, the cool, colorful things you blow into and it spins?  Anyway, he was told to continuously blow into it and when the doctor said his name, he was to point at the ceiling and continue.  This went well for about the first half, then he just stopped.  The doctor said his name numerous times, with no response.  He just sat there, eyes open, just zoned out.  That scared the hell out of me!  I had seen it before, but to see it actually induced was something entirely different!  It was so hard not to just cry right there, that was my baby!  But I held it together so I didn’t scare him.  When he came back, he said “oh”, like he just realized he wasn’t blowing anymore and started back up.  This is when we learned that hyperventilation can induce a seizure.  He forgets everything usually within a little bit before the seizure begins.  There have been stories we’ve never gotten to hear the end of because he seized in the middle and has never remembered what he was talking about.  Scary stuff.

Kylar, of course, is mostly unfazed by all of this.  He is a very laid back, easy going kind of kid.  He, as some of you may know, is now in the band and loves it.  He plays the baritone, which requires a lot of breathing.  Friday nights have been busy with our family since we are in a small county and the middle school and high school are together in marching band.  This past Friday night started out pretty normal (except that our team was losing, badly).  Half-time show was great.  My husband and I and our youngest son were standing right where the band would exit the field and once they all came through we just assumed we had somehow missed our son walking past us, what great parents..  Then I look over at the sidelines and there’s a child sitting down with the band director and another teacher/band mom hovering over him..  That was my child!  I went out there to find out that his asthma had acted up, but that in turn caused a seizure..  This was it, it has happened in public while he was doing what he loved to do.  As a mom, I was horrified and upset for him, but also terrified at seeing my baby on the ground recovering.  I don’t even think I can describe accurately how this felt.  He is such a beautiful, sweet person, and it isn’t fair for him to have to deal with all of this, what did I do to cause my baby to have so many health issues??  I know this isn’t something I did, but you mom’s out there understand what I mean.

Of course, in true Kylar fashion, he wouldn’t let us take him home.  And before any of you jump on me about letting my child refuse to “let me” do anything, I wasn’t going to force the issue.  He really wanted to finish out the game and he was going to be staying in the bleachers for the remainder of the game anyway.  Plus, when he recovered, he was just fine, normal even.  What I was more worried about was the fact that they had a competition about an hour and a half away the very next morning.  He had to get up very early and would be going to bed late (lack of sleep can also bring on a seizure), and to top it off, my husband and I couldn’t go.  But, our preacher and his wife were going.  Their daughter has epilepsy and they have dealt with it for years, so after the game I spoke to them about it.  My youngest child, the very opposite of his brother, proceeded to get into my preacher’s space and TELL him that he “better keep an eye on Kylar!!”.  How very adorable.  His words held no humor, he wasn’t doing this to be cute or funny, he was simply telling them to take care of his brother.  If you knew my children, that’s something.  They have a very volatile relationship,  they are six years apart and complete night and day, they don’t even look alike.  They are usually fighting more than anything, but this night the real love came out.

Of course, all went well.. He had no more problems with the asthma or epilepsy during his day long trip away from home…. AND they won second place in their division and fourth place overall!!  That says a lot for this little band.

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3 thoughts on “Epilepsy Sucks

  1. I can feel for you because I have children and know how if there is anything causing them pain I am in pain. I think it is hard to stand back and let them live their lives and not be protective while worrying the whole time.

    Liked by 1 person

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