So, it's been a crazy few days around here. No surprise, right? We've seen increased seizure activity, decreased Charli. Several days ago I noted Charli wasn't smiling as much, she was laying like a blob when she should be playing on her mat, not engaging with us when we talk..slipping away from me. I think this is mostly related to the increase in Depekene she was on. She doubled her dose overnight, and since then things have deteriorated quickly. We've made some med changes (adjustments I should say) and yesterday my bright eyed smiley girl returned. A miracle in itself.
Now for the spasms. Damn spasms. Yesterday was what I call a good day. 80 by 930p. That is a good day. She ended up with about 100 for the day after she finally went to sleep around 12-1230a, still a "good day". That is pretty sad , isn't it? That 100 spasms is a good day? After seeing her smile disappear for days, and then reappear yesterday it essentially scared me to the point of no return. I can't, I won't watch my baby slip away. I can't have the glorious smile fade, those bright shining eyes glossed over with medication haze and confusion. I had to make a choice. Continue my pursuit of Vigab and the strong instinctive feeling that it will prove all the dr's wrong, or give in and deal with my fears of ACTH and give it a go. I heard myself tell Dr M that I think it's time, and didn't really know I was saying it. My heart made the choice for my brain. Rational thought and side effects and anxiety can't rule anymore, that smile, my reason for living, for fighting, for researching is what drives me. I can't lose it. My heart can't lose it. I need that smile to know that life is ok, because when she smiles at me ( as she so often does during the day and night) it's the only time I feel like life is ok. I get lost in that moment, that overwhelming feeling of having those blue eyes stare at me and that big gummy grin, and I know my little girl is happy and loves me. She does not know of the demons she fights, and I fight for her daily. She just knows that her mommy loves her, and her daddy loves her. And that is all I need for her to know. No, that isn't true. I need her to know (someday when she can understand) that I will do anything, everything for her to keep her safe and healthy. I will go to whatever lengths needed, push myself harder to get her the best care and treatment, reach out in more avenues to get her story heard..and the stories of her friends (and super moms) that we've met along our journey. Kindred mom spirits that share my frustration, my joys, my fears, my tears. Without them, and without the smile that is the light in my life..I would be lost in a sea of fear, guilt, doubt, anxiety, sadness, anger. So to you moms (super moms..you all know who you are..moms who have to watch or have watched their child/children struggle with health issues) I say thank you. For your support, friendship, kindness, laughs, distractions, coffee/tea latte tips. Please know that we will fight as hard for your causes as you have fought for ours.
I sit her second guessing myself even now. And I'm sure this will be the case all weekend. Should I do this, can I do this. I know the answer is yes, but my brain is fighting my heart right now...but my heart will win. Because my heart is my daughter, and I will do anything for her. And my heart knows that it will be ok, because that big smile and bright eyes tells me so.