We had so much fun at our Halloween events. We celebrated party #1, the eve of Hurricane Sandy, despite or inspite of the pending Hurricane we packed the house at the Ceol bar . Our friend Channon planned the whole party and our friend Loretta, proprietor of the Ceol Bar and Pub, donated her dining area at Ceol for our use. There were several awesome kids vendors that came out. Joanna of Cheeky Monkey Party, came with her bag of goods- tons of kids party games and crafts. Jonah had a blast playing with the home made robots from the Brooklyn Robot Foundry, this place is so cool. They make robots out of repurposed motors, batteries and recycled materials. They came with a big table and a bunch of little robots, Jonah was memorized. Our favorite kids musician Pete from the Hootenanny Art House came out and brought down the house. We had bobbing for apples and face painting. On the way out the parents told me it was the best Halloween party that they had ever been to! One family said to me we had so much fun, we owe you more money, can I make a larger donation??
It felt good to do something domestic and celebrate a holiday. I baked, made goody bags and planned costumes. I haven’t done anything like that since diagnosis. I’m very much indebted to our community for initiating benefits for JJB. Thank you Channon & Loretta from Ceol, Jane and Kenzie from Work Space, for party #2!
On Halloween we had a benefit at Work Space, Jonah’s Physical and speech therapy studio. Jane and Kenzie our therapists, set up a Spooky Maze, an obstacle course for the kids. I was very touched to see our friends come out to support JJB. It was really cute to see Jonah come up with his sitter all dressed up and ready to go Trick or Treating for the first time. He loved the maze, crawling through tunnels balancing as he walked over a ‘rickety bridge’ over the mote and seeing old friends.
The events leading up to the Work Space event did not go as planned. I had left a lot of loose ends to tie up on Wednesday, thinking Jonah would be back to school, by then. Which he wasn’t, trying to pull everything together, was difficult with Jonah wanting to ‘help’. Then I couldn’t get a ride to Work Space, all the car services were tied up because of Sandy. I was stressed and late to our own benefit. Jonah’s sitter Gabby, ran outside for me to try and hail a cab, while I called every car service in town. Gabby actually caught one for me. 
My volunteers couldn’t make it, no transit. Again Jonah’s sitter Gabby came through for us. Gabby had a house guest Rebecca, staying with her. Rebecca was touched by our story and wanted to come help, she hopped on her bike and sped over. She helped set up, passed out goody bags and helped the kids through the maze. On the way out I realized I had for gotten my coat, it was freezing out, no way to get a ride home. Randomly enough Rebecca had two coats on her. Here’s this stranger I had never met, coming to our rescue spending 3 hours helping and then she literally gives me the coat off her back. To top it off I get home and Gabby refuses to take payment for the evening, her way of donating to JJB. It’s people like Gabby and Rebecca, that make the World a better place. You know I know what it’s like to benefit over and over from the kindness of strangers. I hope that I can pay it forward for someone else in need. Hence my next story.
I’m ashamed to admit that I was completely clueless of the destruction that the hurricane had caused and the ramifications that we’d feel for a long time to come.
We don’t have a T.V., when Jeremy told me the storm was coming, I didn’t take it seriously. To many other things on my mind, I live in a Sanfilippo fog. After the storm Jonah was out of school all week. I didn’t get a chance to check out the news reports online until the weekend. I was horrified to see what had happened to Staten Island, Long Island, NJ, Red-hook... Mass destruction and loss of life. It’s such a shock.
Imagine closing on your first home, moving in and decorating the nursery for the baby your expecting in a few weeks. A new home with a yard for your eldest to play, while she waits for her baby sister to join her. The American dream, then a hurricane comes along and completely destroys your home. This is what has happened to friends of ours. Their plight has forced me out of my Sanfilippo fog and reminded me that unfathomable tragedy comes in many forms. I feel guilty for shrugging off the storm, we could have purchased a home in any one of the areas that got hit. Instead we landed on a hill, far enough away from the water, to have sustained any serious damage.
For those that have wanted to help and just don’t know where to give, here is a wonderful family that needs our help. A family that has been very supportive of JJB. To help, click here.
Election day is tomorrow! Much of what JJB and our rare disease community have been working so hard for, has a lot riding on this election. My mind would be at ease to know that people like Jonah who are dependent on expensive and life long treatments will be protected. Knowing that we have a president that believes in and understands the value of science would be a huge stress relief. Our rare disease community works extremely hard at improving public policy in regards to rare disease legislation. It would be nice if we had a government that appreciated the work that we’re doing. With all do respect, on Thursday I’d love to go back to my Sanfilippo fog for another four years, with a peace of mind that we have a president that has our back.
Hope for the best prepare for the worse. My new motto.
Cheers, Jill
