Well today has been two weeks and three days since Abby’s last seizure. One month since her first two.
We have since taken her off of one medicine, Keppra and have her on a new, stronger anti-epileptic drug, Trileptal.
We appreciate each and every moment she is living her life, laughing, singing, dancing. We even appreciate the moments she is being her typical 13-year-old “challenging” self! We appreciate seeing her live her normal life.
I value every moment I have her (and Emily) and see her living a normal life.
Of course, I always have, but this new life we are now living, gripping each moment in the hopes her brain doesn’t do its funky little dance, everything is so much more ….. more precious.
In the weeks that I have been sharing the stories of my family, I have had moments when I wasn’t sure if it was the right thing to be doing, telling you all about Abby. But Abby and my family say it is OK.
I must say sharing the details of all of this, has brought into my life strangers who have read what I have written. These strangers, now friends, have shared their stories with me about their own epilepsy and/or their child’s.
They have spent time “with me” only to help me and my family and Abby.
These people who have reached out to us were so unexpected, yet so needed.
I was only writing in order to deal, heal, cope, understand, work through my tangled thoughts so I could better understand what is going on.
It’s kind of the way I operate. Artists create, musicians make music, writers write.
I recently wrote a post about the terrible murder of baby Jonylah Watkins in Chicago. I pondered why such a tragedy happened. I do not have the answers as I do not have the answers as to why Abby is now dealing with seizures.
I was taken aback when a man lashed out at me in anger for sharing my thoughts and feelings. He apparently disagreed with my thoughts, and thought I was being too “kid glove” about it.
Sir, let me tell you this, there is nothing kid glove about murder. There is nothing kid glove about a diseases that comes out of no where to steal a child’s laughter. Nothing.
I wrote about Jonylah Watkins with the heart of a mom. Thinking of her mom’s heartache and grief. I wish I could do something to help her or make it make sense that a gang banger murdered her baby. But no one can do that for her.
I am not saying we share the same level of heartache, Jonylah’s mom and me. Not at all. I would never compare what we are going through in our life, with the tragic loss of her baby.
I know she will not have days to watch Jonylah laugh, dance, sing, be a “challenging” 13-year-old. And I am so, so, so sorry. There is nothing that compares to her pain.
I thank those who have reached out to me in kindness and friendship.
For those who don’t understand me, there is nothing I can say.
Until next time, love each other….
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