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Why I Celebrate Every Seizure Free Day

How many of you have ever seen someone, adult or child, have a grand mal seizure? It is pretty darn horrifying. Yep, that is about the best word I have to describe it. Never in a million years did I ever think Dominic would have Epilepsy. I thought I had a pretty good "handle," on the Autism thing until the grand mal seizure Dominic had in June of 2015. I was hoping and praying that he would just have the one and that would be it.  Little did I know, there would be four more seizures (not grand mal), the most recent at the end of June of 2016. Do I ever fully relax when Dominic is at school, even though they have an emergency plan for him? Nope. Do I let him stay with a babysitter? Nope. I am in constant "high alert," status when he is not with me. It's really, really hard not to be, believe me I've tried. The only thing I knew about Epilepsy prior to Dominic's first seizure was that you have to put the person on their side. I had presence of mind that day in June of 2015 to at least do that. I wish I could go back and thank the 911 operator I talked to. I was so stressed out because a few times I didn't think Dominic was breathing. She told me to count in between his breaths until the ambulance got to our house. The paramedics and the EMT's were so great with him and with the hubby and I. I admire them, I know I couldn't do that job! I had no clue that many times, Epilepsy and Autism go together. Who knew? I wonder into the future, will he be able to get his Driver's License? I have asked Dominic and he says he wants to learn how to drive. Do I tell him no? Is it possible? Will having Epilepsy prevent that? He is on a pretty strong dose of anti-seizure medication. This morning, in the rush to get both Dominic and the hubby out the door, I forgot to give Dominic his anti-seizure medication. Ugh. That is like the second or third time I have done that since this new school year started! Each time, I toy with the idea of just letting him skip it, but my anxiety won't let that happen.  I sent a message to Dominic's teacher as soon as I realized that I hadn't given him the medication, then I drove down to the school and met Dominic and his teacher near the office. Luckily, he doesn't get stressed out when he sees me (he actually gave me a kiss), he just washes the medication down with a cup of water and says, "bye Mommy!" This past Wednesday was 100 days since Dominic's fifth seizure.
 


We go for a check up with his pediatric neurologist in about two weeks. I am so grateful that he is on a medication that stops the seizures. I feel for those parents that are still searching for a solution. I can't tell them I understand, because I can't even imagine the stress they are under.  I sometimes wonder if I have post-traumatic stress disorder. That day in June of 2015 was like a 100 on a scale of 1-10.  The only time that comes close to that level of stress was back in January of 2011, when I had to rush Lauren to the hospital with severe abdominal pain and my mother-in-law passed away in hospice care on the same day. I'm already on two anti-anxiety medications. Those medications keep me balanced and I'm glad that I am on them. I have had more than one person tell me their child "outgrew," their seizures, I'm hoping that Dominic will one day be in that category. Until then, I will continue to celebrate every seizure free day.

Comments

  1. As usual, you always know what to do and do it. Your mommy instincts are so right. Learn to trust yourself. I know you know Dominic is in God's hands and God's plans. Trust in God. Love, Auntie

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