First, an update on Meara. Meara had another status seizure a few weeks back. Meaning we had to give her the rescue med because her seizure lasted longer than five minutes. It was 1:30 in the morning. We decided not to call 911 because the med stopped the seizure within a minute and she was still breathing.
Ainsley was awake the whole time. Ainsley sleeps with Meara, her choice but also another form of alert (besides the seizure camera) for Megan and I. Ainsley was upset. For the first time, in our opinion, she realized that this seizure could determine a lot. She was definitely scared of losing her sister. She told me this and it was at that moment that I realized that makes three. Three of us who understand the implications of the "big" seizures.
What I am sharing next is not for sympathy but in determination to live a honest and vulnerable life. Without authenticity I am but a empty vessel without a course on the open sea. I am seeing a therapist once a week for post traumatic stress disorder and generalized anxiety disorder. I thought I was going in to treat my depression but it appears that my depression is but a consequence of trauma. Existing on "high alert" is apparently no good for living. This is what Megan and I do. We are on high alert 24-7. Even while "sleeping" at night we are on high alert. SUDEP (Sudden Death in Epilepsy) is a wicked thing. It has a taken a big toll on the both of us, perhaps three of us. Physically, emotionally, mentally, even spiritually.
We do not have the answers. Answers to these questions: "What do the doctors say?", "What are the next steps?"
The answers to these questions are…nothing. There is nothing to do. Meds don't work. Another surgery would mean a hemispherectomy resulting in paralysis on the left side of Meara's body. We are waiting for FDA approval of the neuropacemaker for pediatrics. This would require another surgery but would not involve removing more of Meara's brain.
I told Ainsley when we were alone in the car together that we have a lot in common. We both have siblings that have a medical condition that we can't cure. We both want to fix it and make our sibling better but we are powerless to do so. We are both scared of losing our sibling. In my case, Ben is in heaven. So yes, I lost him…temporarily. In Ainsley's case we are still hoping for seizure control for Meara. I think she still has hope. I'm sure she does. I also know that she understands the gravity of what is going on.
I don't know how to explain to Ainsley that all of this it out of our control. That we can't choose our situation in all of this and we can't change the circumstances. But we can choose how we react. How we go forward. We can choose compassion, and love. We can choose humility, knowing that all of this is bigger than ourselves.
Intimacy is a sacred thing. It is why I share this with you. For the sake of connectedness and belonging. I do believe that we all have a signature to our soul. Perhaps if we shared with each other our vulnerability we would learn that we aren't alone in our origin or our journey. I want to thank you for gentleness, for patience, and for reverence. My hope is that living a honest life with you will unveil the concealed beauty among us.
Love and light.