July sees a Christmas tree for the first time
Happy holiday season to everyone!
Hi wonderful readers!
Greetings to all the new subscribers. I appreciate that you are here. I’ll resume sharing my story on Sunday, but in the meantime we are going to put up the tree today. I wanted to send you a little gem of a video of July seeing the Christmas tree for the first time last year.
Such a fun moment for me! Can’t wait for Santa to come this year.
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Reader Comment of the Week
“Sadly, your beautiful description of “never being so close to the edge of existence” is too clear, and all so much more real. Gripping, painful, and heartbreaking. I am so thankful you made it through these harrowing days.” - Betsy Lupetin
If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.
Thank you to Roy Lenn and Richard Burwick for your founding level donation.
Rare Disease Girl is a reader-supported digital atlas for navigating life’s inevitable challenges: personal memoir, illness, parenthood, and health systems. Both free and paid subscriptions are available. If you would like to support my work, the best way is by becoming a paid subscriber. Thank you for being here.