Still pretty easy to follow, enjoying not having the “always hungry” feeling. I had no idea how much sugar is in food and how much the added sugar has been contributing to my hunger. I’m taking the kids 4 wheeling on Sunday (Rachel’s Deathiversary) with Colorado Jeep Girls and I need to plan ahead for lunch. Headed to Anna’s that night and will probably bring vegan chili for tacos. Breakfast was coffee and later on I had celery with peanut butter. This was lunch: I picked these beauties up from Walmart today. I can’t eat an occasional soy dog without ketchup and I need protein and peanut butter on celery is good for that! Sleep: 5 hours 54 minutes Weight: 7 pounds lost Steps: 17,515
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.
I’ve been busting my ass this past month. Trying to bring myself back into the land of the living. Therapy, a physical, multiple medication appointments to slow my racing mind. I’m redoing our website for Geek Media in line with coming back from England. Headed to England in a week and a half. I signed up to start a 500 hour, comprehensive, Yoga Teacher Training as I want to teach yoga classes for grief and healing. Rachel died 188 days ago. 6 months without her, it feels like she died yesterday. People think that losing a child gets easier with time and I can say after 6 months it seems to be getting harder. I know I’ll never be “right” with her death. This trip to England should have been organized by Rachel, not taken in her memory. London and Boston had their birthdays and my kiddos are now Forever 16, 13, 12 and 11. I have been offered a part time job at amazon at night sorting packages for delivery. I’m actually looking forward to it despite the low wage. An excuse to get out of the house in a 1 million square foot facility, 4 minutes(read the rest)
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.
One of Rachel’s favorite movies. Rachel became a vegan before she died, perhaps you can try a vegan meal in her honor.