Part of this process requires a significant amount of down time. I know Samime and I spend hours of our week simply sitting. With Derya’s waxing and waning behavior you can never make an accurate prediction of her needs, activities and wants. It’s more of a measure that changes with the moment with zero predictability.
So we sit. This sitting, for me, allows me to come up with these posts. For Samime, she uses that time to do what she always does, clean. She doesn’t really sit. She’s up and in the hallway, cleaning Derya’s floors, vacuuming the rugs in Derya’s area of the house, folding laundry while Derya maybe sitting on her bed, writing Thank You cards, or scratching some picture or random thought onto one of the notebooks we have available for her.
Of course, this is beyond the usual things that we need to do for Derya, helping her regain the skills she has lost, making sure that she eats enough, helping her feed herself and various other aspects of care.
Last week, I talked to Derya. Not the waxing and waning girl that my wife and I are caring for. But Derya. The rare glimpse of the young woman who I helped to raise. She “popped in” as we were giving her treatment. In a more than emotional moment I heard the worry in her voice, the fear in her face. I remember now, over a week and a half later the words I said to her when she looked around in confusion.
Mission From God!
“Derya, it’s okay. You’re home. You’re safe.”
“Dad?”
“I’m your dad. You’ve been sick, but you’re getting better. You will be better. You have a mission from God. You’re going to save other kids just like you. Believe in yourself. You’re a hero.”
It was more of a monologue from me than a conversation. I can’t explain the feeling. It was the certainty of feeling in something. I knew she was there, looking at me and hearing what I was saying. Her focus, attention, and look on her face. Derya was hearing me. She heard every word I told her.
So now I sit, listening to our music list in the background. It’s our music list because it’s the music that Derya listened to all those times we went off to look at colleges. I’ve augmented the list with some more modern versions of the same artists and those I think she would like. Cosmically, my daughter and I have similar music interests in modern music.
One of those songs is “Begin Again” by Rachel Platten. I know that Derya would approve because it has become one of the songs that is a Clarion call. The chance to begin again, start over. She needs that as we all do. A chance to start over. In this, I hope Derya sees the Mission she has, to help all those who are sick and fighting for their rights; those fighting for the freedom to not live in a tyranny by a medical profession that sees psychiatry as the only answer.
ABOUT US!
James Baldini blogs about his daughter’s care and the tragedy that has surrounded the entire family of Derya Demirtas. Derya has had Autoimmune Encephalitis for nearly four years now. The young advancing, brave and stalwart young woman Derya Demirtas, has suffered much throughout that time. As has her family and friends. In someway we hope to see a change within the medical community so that it may better adapt to this disease and prevent future generations of victims.
You can read more from James Baldini @ www.JamesBaldini.com
#FreeDerya #JamesBaldini
I love this!!!! So beautiful Jim!!
Keep your hope alive!! You and Samime will get your daughter back!! ❤️ You two are the epitome of what it means to be parents. Love you guys so much!!! Looking forward to the day where the 8 of us can get together, BBQ, swim and laugh together. XO!!