https://www.rethinkingiran.com/feminist-futures/their-memories-for-revolution-faye-ginsburg?mc_cid=0881da0da1&mc_eid=a33c308c11

Faye’s powerful essay includes a beautiful interpretation of Sam’s signature wings photo. Visit the site and give the wings a minute to unfold to get the full effect!

“A really amazing life. I’ve had FD (Familial Dysautonomia) my entire life. I’ve learned to live with it. I used to be an ambassador for Make a Wish and I’ve been on television a couple of times as a spokesperson.

I’m interested in music, media and objects (I have lots of cool collections!), and I love movies and sitcoms!

Natan interviewed me in 2003. You can also learn more about my family’s history.

I would like to be known as a good person, loyal and generous to others. I try to help out by raising money for different causes. I hope to educate and inspire the people who read my blog.”

I"m super duper excited about my Gilmore Girls themed birthday party coming up soon. I am counting down the days, 21 more to go! I've been preparing by watching me favorite episodes, making crafts from the show, and putting together a guest list. It's going to be over Zoom because we are still in the pandemic.

The first thing on my birthday wish list is the medallion bracelet that Dean gives Rory in the first season, I love it so much. All other gifts can be donations to FD because it means a lot to me. I'm super excited to see all of my friends too.

This has been the worst year ever. I was able to take my mind off of the bad year by doing things like online shopping, reading, and keeping in touch with friends and family via Zoom. I even had a couple of virtual concerts where I sang from the comfort of my room (see photo). I was still able to participate in my regular lessons, except it was through zoom. I wish it could have been in person, but I was staying safe for my health. I was mostly upset I couldn't go into any of my favorite stores, but going outside to the garden, mask on, was the highlight of my days (see photo). Even though this year was pretty bad for everyone, I'm hopeful next year will be better with the silver lining of a vaccine.

 

Got to spend time with my family!  I went canooing, went out for lobster, crab cakes, popovers, and other delicious things (yum!). We also went to the movies and saw Mud which was good and scary.  Lily and Nicole and their dog Bosco suprised everyone by coming up.

My parents and I went to San Francisco for a week it was a birthday present. We saw a bunch of friends of ours and we also had room service which was awesome. I saw the "Full House" house and the house from "Mrs. Doubtfire" we also went out to dinner but we also stayed in some nights. We stayed in a suite with a huge table and couch there were also 2 t.v.s and everyday when we got back they put my bandana around my doll's head or neck. It was really cute we also went shopping for friends, and I got a really cute mug that looks like a black digital camera.

 

Two weeks ago I went to my friend Marina's wedding, and it was so beautiful. Her dress was white with lace all over it was so beautiful and her vail looked exactly the same. The wedding wasn't that long i stayed until 9:00 p.m. which is pretty late for me. Anyway i had such an amazing time. The music was great, and there were so many people. I can't even count i danced in my wheelchair with my mom which was a lot of fun to do.

This photograph was taken from my apartment in the village in New York City, looking south toward the new Freedom Tower which is still being built. The bottle contains the fluids I need to give myself every 90 minutes through my g-tube, using a tube and syringe which you can see next to it. I like how the bottle resembles the Freedom Tower from this angle. The bottle also gives me freedom since without those fluids, it would be ha rd for me to survive. I used to be able to drink water and black coffee. After my 21st birthday, I got pneumonia and I was in the hospital for three weeks and I was no longer allowed to drink any fluids by mouth. When I am in a restaurant with my friends and I see other people drinking coffee I wish that just for one day, I would be able to drink. The glass cup with coffee on the right side of the photo is one of the simple things in life I wish I could have that would mean I was free of FD. The photo shows the reality of FD and how I manage everyday, and one of the dreams that I have to live without so many restrictions.

After submitting this photo to "The world through my eyes" contest, which I have won and was awarded with a certificate =)

Today I got my stitches taken out after 5 months of waiting.  I was so excited that they finally came out.  I want to celebrate that they are finally out.  Here is a picture of my beautiful eyes.