Tomorrow would be Rachel’s 17th birthday if she were alive. It is going to be a really hard day for me. I’ve posted an event on facebook asking folks to do something special for her birthday. Try veganism, eat a cake, donate to a food pantry or animal shelter. Something. Here is a link to the event on facebook: https://www.facebook.com/events/116765288898308 I knew she was going to die but it never really sunk in until she did. Life is so short.
It’s easier said than done. Having your child die. For years I could speak about having a terminally ill child quite easily as I had clearly removed myself from what that really meant. I sit here next to a box of ashes that holds the true meaning of “terminally ill” and I am frozen. After she was diagnosed with Juvenile Batten Disease I set out on many road trips to take her and my other 3 kids places, while we could. Making the most of life, making loads of awesome memories. On every road trip, as the kids were listening to books on tapes or watching a movie, my mind would always wander and I would think long and hard about what I wanted to do to celebrate her life when the time came. My rule, without question, was to spread her ashes within 48 hours. I have had her ashes for a week. They sit next to me while I work, sit in my lap while I stare at the wall from the couch and they either lay next to me in bed or on the table next to where I sleep. 48 hours is long since gone and(read the rest)
It’s crazy. A positive pregnancy test turns into an ultrasound with a fetus. Soon followed by kicks then a screaming baby. Hopes and dreams for the future. Milestones met. First words, walking, running. Getting into everything. Difficult times in school. ADD. Autism. Encopresis. Blindness Batten Disease Every possible hope and dream. My child. Erased. Literally turned into ashes.