Tag: batten disease

It’s been 11 months to the day that Rachel went away. Well, closer to a year now that I let this blog post slip away and stay in draft mode. I’ve been talking a lot with the kids and having conversations in my mind about what I am doing with my life. What kind of Mom I am. When Rachel was alive but getting worse because of Batten Disease, it became more difficult to leave the house. I was able to get her out of the house but it was really hard to accomplish and we could only go out for very short periods of time towards the end because of the bathroom and she couldn’t bear her own weight long enough to safely transfer from her wheelchair to the toilet. She didn’t really want to go many places because it was hard on her and loud. In private moments away from Rachel (when she was in school) I would talk to the kids about what we would do when she was gone. It was a shit conversation to have with them. Knowing that their sick sister was holding them back from living life, knowing that I would one day(read the rest)

Last night was a disaster. I work at an Amazon warehouse about 28 hours a week at night / on the weekends. Lots of deaf people work there and in order to help the deaf and the hearing communicate, Amazon periodically offers (optional) basic sign language classes. I went to my first class last night. The teacher and interpreter come in, both awesome and friendly. What are the odds that the teacher’s name is Rachel, the same name as my dead daughter? I fought back tears the whole class, tried everything I could think of to hold it together. Seeing her sign the letters for R a c h e l repeatedly, knowing my daughter could never have learned to sign because she went blind. It was too much. I am so upset that I couldn’t control my emotions, in public, for the first time since she died. I am angry that my grief is public and I feel exposed. My grief life and my fake work life have intersected. I want to quit. I tried to cry it out in a bathroom stall but had to stop in order to clock in to start my shift. Standing in the(read the rest)

This is how I like to remember her… The picture with 2 of her siblings (the little one wasn’t born yet) also features my brother, Clive.

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(read the rest)

I forgot it was picture day at Homeschool Enrichment and I’m on a budget so I didn’t buy any packages. I took these of the kids, quickly, as we were headed into school. The bottom picture is Rachel from a few years ago while we were waiting for the bus. Julie London Boston Rachel : 2014 or 2015

My cousin Zoe and her fiancé Glen went to Bushy Park in England to visit the tree where I spread most of Rachel’s ashes. This was over last weekend. Thank you for sharing guys.

Juvenile Batten disease is a fatal, genetic disorder of the central nervous system that begins in childhood. Early symptoms of this disorder appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of vision, motor skills and the abilities to eat and initiate elimination. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is fatal by late teens or early twenties. This was 2004 when she was 4. She was perfect.

I did keep about a soda can’s worth of “her” because I couldn’t let go and I want some for necklaces in the future or to plant a tree with when I buy a house again. Julie, London, Boston, my Auntie Alison and her daughter – Cousin Zoe we’re all there. I found a beautiful tree in one of London’sRoyal parks called Bushy Park. Todd and my parents had not flown to England when we spread the ashes but Todd took this picture when he did arrive. I miss her so much.

It has been 139 days since my daughter died and I still haven’t been able to write her obituary.  I don’t want anyone else to write it or any offers of help, it’s something I feel I must do on my own. 139 days feels like a grain of sand on a very large beach.  Like no time has passed.  Like it was yesterday.  It still surprises me how much harder it gets with the more time that passes. I need a road trip.  Maybe that will give me some inspiration to write a tribute to my daughter, one that she really deserves.

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