Tuesday, June 10, 2008

In THAT Place

So... yeah, I had to reset the seizure counter yesterday. This is a frustrating setback. Brady had a low grade fever yesterday and we are hopeful that this was the cause of his seizure and not some other underlying issue. When we last met with our neurologist he explained that the odds of a seizure medication working (and by working I mean getting rid of ALL seizures) go down with each medication failure. If one medicine doesn't work there is still a strong chance that the second will. But if two meds fail, the chances of success diminish substantially. Three or four failures and one may be facing Intractable Epilepsy. Thankfully, Brady is on a medium-ish dose of Keppra so we could increase the dose several times before we have to switch to or add another med.

I thought I was used to these episodes and would just roll with it. But the truth is that the last two months without seizures have been life changing and I am terrified that might change. We have gone out on dates. I have been better able to focus on work while I am at work. Brady hasn't missed any therapy appointments, play dates or swimming lessons. We have all routinely slept through the night. I have even started to shed some of the 50 extra pounds that have piled on (my chosen method of stress relief) since Brady's birth. I am trying to learn from all of this and be able to take care of myself better whether or not stressful circumstances are present in our life.

So this is me panicking and projecting one five-minute episode yesterday afternoon into the indefinite future. I have been reading a book on the process of grief that every parent of special needs children goes through. This panic is normal. It's part of the process and I am learning to better recognize this and not get STUCK in this one particular place. I have also learned it's normal to jump back to different phases of the grief process even though I have already reached (or thought I had reached) the phase of acceptance. I really should have read this book, um, TWO YEARS AGO!

The book is out of print and was written in the '80's . The language is a bit out of date (ahem, somewhat un-PC) but the message is timeless. I would recommend it to any parent of children with special needs. Thanks to the Foundation for Blind Children for introducing us to the book through their After the Tears Program. And thanks to Troy for bringing me a copy after I couldn't make it to the program last week. I am gearing up for the meeting this Friday because I always ugly cry in front of those wonderful people!

4 comments:

Lindsay said...

I am so sorry for your setback. I hope that this medication will keep working for him. You are wonderful parents. We will be praying for you guys.

Sara said...

Oh, I am so sorry for Brady and for the two of you... what a discouraging setback! (I hope that it was fever-induced...) We will be crossing our fingers and sending prayers...

Jane said...

I think that regardless of what we each struggle with, we all understand "THAT" place. I'm so sorry, I hope something great follows in the days ahead... {{{hugs}}}

onceapickle said...

I'm so sorry. I can't imagine how frustrating that would be. I will hope that it truly was fever induced and that he will go right back to being seizure-free. You are both such amazing parents and your blog is incredible. I so appreciate your honesty and willingness to share this journey with all of us. Love you guys!