Something I want to write down to remember, to put into words…
When Rachel died, a small part of me felt relief. For me. For her. Some people who have a child die after a very long illness don’t feel this way and some won’t admit to feeling this way. But I felt a small piece of relief when she died. I feel incredibly guilty for this feeling. My daughter died after suffering for a long time. It wasn’t, usually, painful for her. But emotionally, she missed out on several good years of life. Batten Disease robbed her of her sight, her ability to walk, function normally, her friends and her childhood.
It got harder and harder to take care of her. Listening to her talking incessantly. The diapers that followed. She couldn’t leave the house, she didn’t really want to leave the house. It was really hard on her. Hard on me. Hard on her siblings.
There was definitely a strain on our relationship that grew more obvious to me as she got more affected by Batten Disease, as more of her brain cells died. I am sure that part of my feeling of relief comes from the strain on our relationship.
This is the part I really want to write down:
When I look at Julie and see how smart and awesome she is and reflect on my relationship with Julie (and her brothers) it makes me realize how much this disease really robbed me of. What it robbed Rachel of.
When I think of what it would be like to have a healthy, nearly 18 year old daughter, it brings me to my knees.
What would it be like? It’s a daydream I try not to have very often because it’s a reality I will never know.
One that I would do anything to have.
I miss her so much.