I Forgot to Miss You

Dear Epilepsy,

I forgot to miss you. You’ve been in our house for over two years now. At first, you were so quiet I didn’t realize you were even there. I had been actively blocking the doctor’s warning that said many kids with neurological impairments will develop Epilepsy.

Then there was no denying your presence.

So I found my community, other seizure moms who get it, and I may have gone a little crazy.

You were stealing my son, little bits of progress he’d made that were hard won, like eating and having energy to get through the day and sitting independently and walking safely. You even stole a part of me that was comfortable and you tied me to worry. Though you and I spent a lot of time getting to know each other, we didn’t become fast friends. On the contrary, I’ve tried almost everything to defeat you.

Aidan has been on six seizure meds, and yes, I understand that there is a decreasing chance that they will work. This summer I will find out if Aidan is a candidate for the Ketogenic diet. I can’t say I’m really excited about that but I will do whatever I can to be rid of you.

Then, a few weeks ago, you tip-toed away for just a little while. I forgot to miss you. Perhaps it was because I was so busy watching Aidan during his painful recovery from major surgery; or maybe it was because I was exhausted from having to care for Aidan in his immobile state; or it could have been because I was just so tired of it all. I couldn’t get excited about you not being around much because I realized your absence was a result of Aidan’s brain being shushed from anesthesia. His whole body was shushed, not peaceful, but held under for awhile.

Anyway, I forgot to miss you but I suppose it doesn’t really matter because you’re back as I knew you would be. Aidan is healing and in some strange way you’re part of that for now.

Next time you’re gone it will be for good and I won’t miss you one bit.

***********

Telling our stories is so important in raising awareness about Epilepsy. Please link up below and share yours. To our friends who stand with us in support, please take a moment to read some of the links. Remember to rock your purple, learn some Epilepsy facts and share this post. This link will stay open all week and all of these links will show up on the blogs of my fellow seizure moms – Danielle, Christy, and Margo.



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Purple Day Fact Three

There are two major groups of seizures; primary generalized and partial. Within those groups there are many different kinds of seizures which are named according to what they do to the brain and body. Aidan has absence seizures which are characterized by staring into space. He also has myoclonic seizures which present as his hands flying out and his legs flexing. Aidan also has complex partials which are very difficult to tell if they are a seizures or not.

This is why it matters to me:

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