Monday, September 9, 2013

3 months later...

Hey everyone,

Last Friday was the beginning of a new year in in the Jewish faith, but it also marked 3 months since Leah passed. How so much has changed since then. To be honest, we've been meaning to write sooner, but we've been trying to take time to process our thoughts and feelings and it's been really difficult to find the right time and words to post. Especially, since we were always the ones telling people to be positive and have hope; I've been trying to find out what I should be hopeful about now that my daughter has passed away.

I am hopeful.  Recently, I was involved in an art gallery show at work, where the artists donated their work for auction for the UMDF, because they also want to see a cure for this horrible disease. We raised $7800 in the 3 hour event; and still counting (reaching close to $10,000.00 I think) as prints from the event are still selling (The UMDF should have a link on their page sometime this week to buy them). I have hope that we will find a cure and raise awareness for this awful condition that robs so many children and adults of their lives. Leah ignited a new fire within us; to continue the fight  and to continue to share her story of love and acceptance.

We had the pleasure of finally meeting our friend Autumn, a 5 year old little girl who also has Leigh's disease and who'd gone through everything Leah went through as well. Meeting her and her family was very emotional. At first we thought it would be hard; because she would remind us of Leah, but as soon as I started speaking to her, I knew it was a good thing that we went. She was communicating with us, and we could almost understand all those little sounds and movements. What a precious gift Leah gave Zev and I; to be able to see past the tubes, the wires and everything on the surface of kids like her, and be able to understand those subtle sounds and movements. There are so many children who have been abandoned because they have disabilities or can't verbalize and people pretend like they're not even there. I know that Autumn was there, and she could feel us and hear us, and she was trying to talk to us, the same way that Leah would. What a joy to be able to call her mom, Dawn, and let her vent about all the worries she has and be able to sympathize because I've been there so many times before. Zev also got to connect with her husband as well. Zev felt good about being able to be there for him as many had been for him. While we were there, I told her that I still had some fabric left over from the hospital gowns I wanted to make for Leah during her last hospital visit, and I would love to make one for Autumn. Luckily she had one already that had been for her so I just traced the pattern and took it home, and started on one for her.

Here's some pics:

Dawn had told me that Autumn always loved anything pretty or princess style, I wanted to give her something she could wear comfortably. and that was still soft and pretty I'm working on a  couple more that I will also donate sometime soon as well.
We've realized that helping others or making something to donate to a child in need is what's helped us cope through losing Leah. I may not be able to make Leah any more gowns but I can still make gown for other kids who need them.
I also have been creating some paintings to donate as well, with the help of my artist co-workers. Basically, they create a pencil drawing (line art) and I paint it in with watercolor. The first 3 I have are Little Mermaid by Katie De Sousa; Cat Princess by Avery Coleman and Baby Wolverine by Jonboy Meyers. We will be teaming up with different charities to try and create a program where we can give these out to kids on a consistent basis. Ideally, I would love to get a group of artists together and go to the hospital to visit kids and draw for them there, but that will take some more legwork, but I plan to make it happen.
Meanwhile, Zev is trying to get all the paper work together to form the Non-Profit and establish ways to help promote MITO awareness through special programs that may include some of the things mentioned above. We want to make it easy for people to get involved by making ways to help available for people to download and use for this fight to find a cure.

Here are the 3 paintings so far:

Next Monday we fly to London and spent the next 3 weeks in Europe, mainly visiting Paris, Florence, Rome, Naples, Nice and Barcelona. We were really trying to make it to Germany but there wasn't enough time but we hope to go back and check out Germany and the northern european countries as well. We're both really excited to go and we hope that we can find some people in those cities that we can interview about Leah. And if not, we will still enjoy ourselves immensely, it's freaking Europe, it's going to be amazing!

One last thing to share is that Zev and I, along with our friend Frankie are working on some songs together again. Zev and Frankie used to be a in band together a long time ago, but are working together again and I'm helping write lyrics and also singing, so it's been really fun. One of our first songs is inspired by Leah and is sounding really cool, so hopefully we can share that and many other songs with you all once they are done. Maybe we'll use the music for the documentary trailer! OR we could just cut all the cool Europe trip footage that we'll have for the music video. We don't know, and that's ok because we're just having fun with it for now, but I think you all will like it. :D

Anyway, gotta go to work now but I'll be sure to continue updating and I'll probably have more a introspective post whenever I get a chance to write at night before bed. those always seem to be the better ones.

Lots of love!
Frani & Zev