Disabled & Proud

Dear Livy,

I went back to work this week. I took one of the blankets that Janet and Evelina made with your picture on it. It helps. It’s laying on the big chair next to my desk. It also helps to see people wearing the rock bracelets that we made and gave out to all who attended your Celebration of Life. It makes me feel like they care and understand how important you were to me and the world. 

There were a handful of cards to open at the office. They were mostly for colleagues who don’t know our how address, but cared enough to send their love. There was also a letter. The letter came from someone who gave me advice about your CVI and often sent me helpful resources. Her letter left me in tears. She had attended your Celebration of Life and heard me talk about IL and people with Intellectual/Developmental Disabilities. She realized it was unique and had never heard the two topics come up together  before. Reading that made me proud because all I’ve ever wanted is for the IL Community to understand how important it is that we serve all people with disabilities. That we don’t just refer them to Regional Centers that are run by social service workers who don’t tend to identify as people with disabilities. 

There is so much that the disability community still needs to do to become truly inclusive. You taught me that. 

My energy at work is focused on organizing people with disabilities to the 49 California Sister Marches to the Washington, DC Women’s March this weekend. You won’t be with us physically, but I hope you will be in spirit. I always loved dressing you up and putting you in your disabled and proud shirts for marches and advocacy events. Your brother will be proudly wearing your disabled and proud shirt this weekend.

Your Dad picked up your death certificates today. I’m bothered by the multiple reasons they have listed as your cause of death. Your OI had nothing to do with  RSV, Epilepsy or Schizencephaly, but they listed it and your Hydrocephalus. I guess that’s just the medical model at its best. They’ll never see disability like we do. 

I miss and love you.



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