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)
When Rachel was little she loved a boy who had cancer. She was a sweet soul who only saw the boy for the boy, she did not see the affects of cancer on his body. After having cancer for a long time, he died as a result of having Neuroblastoma. It is no secret that I didn’t put myself or Rachel’s brothers and sister through having a funeral for Rachel. Instead, in March, I am going to shave my head (for the second time since 2006) in honor of Rachel’s friend, Nathan and all kids who have survived cancer, who died as a result of cancer or who are currently fighting cancer. St. Baldrick’s raises money for pediatric cancer research and they hold fundraisers all over the United States, where folks raise money through donations and then shave their heads. I am shaving my head on March 16, 2018 and am asking for donations. For Rachel. For Rachel’s friend, Nathan. For any child you know who has or has had cancer. Please follow and donate to the tax deductible St. Baldrick’s fundraiser by clicking on this link. I shave my head back in 2006 for St. Baldrick’s. This featured image(read the rest)
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)
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.