Tuesday, September 23, 2014

A Tru-ly magical evening

I'm back, after several months away from this blog. I've been meaning to make time to do this consistently, but life always finds a way to get in the way. All I can say is I'm working on it! :/

However, the experience I had last night was what's made me revisit this blog and continue writing. We had a chance to meet the Zakar family (Erika, Todd, Victoria, Dean and Tru), who we became friends with online through Leah's journey. We took this opportunity to record their interview that we hope to show in the documentary we're making about Leah. It was a night full of emotions, tears, laughs and lots of hugs, but it also reminded us of why it's so important to continue working on this project. Hearing Erika describe how Leah's story impacted her and seeing how emotionally invested she was in Leah's care was an amazing experience. She said it made her appreciate life more, and brought back her faith in humanity, among many other things that I'll save for the documentary. I don't think we ever could have anticipated the affect we, as a family, would have on other people outside our immediate circle, but as we continue to interview more and more people, it just becomes so much more apparent. It was a joy to finally meet them in person after knowing them for so long through Facebook, and we especially loved meeting Tru, their 5 year old daughter.

Tru was shy at first but once she met our dog Roxy, she opened up and couldn't stop laughing for about 10 minutes. Tru has cerebral palsy, so she's not able to stand on her own, she uses a cute little green wheelchair and when she's not sitting in that, she sits upright on the floor. For someone who can't walk though, she is fast on her bum! She can scoot herself in any direction using her hands and feet, and especially on our hardwood floors, she was sliding around like crazy!
We were so happy to be able to have kids in our home again, even for just one night. Her nephew Dean, who's 3, was also a lot of fun to play with. After playing fetch with Roxy for a while, we also did a lot of other fun things.
Examples include:
- Imaginary tea party
- Imaginary bake-off (I won 3 blue ribbons!)
- Imaginary wizards and magic fairies
- I drew an awesome picture that Dean and Tru described (don't want to spoil it, but it involved a dragon-snake, Roxy, Leonardo the ninja turtle, Mario and Luigi and Tru and Dean...I'll post it up when she's done coloring it in, since it was all in black pen)
- We played in a band together, Tru and Dean on drums, I was on guitar and later on we all played on Zev's keyboard.
- Slime!
- and others...

As I mentioned already, having some noise in our place again felt good. We got so used to having a busy home, with nurses going in and out and alarms going off at every hour; recently we've become so much more aware of how silent our home is now. It's like you spend all this time getting used to it, then suddenly, from one day to the next, it's all gone. That's been an especially difficult transition for us. Needing to juggle what feels like a million things at once, and just knowing that every decision you make is done to improve our daughter's well being, and then not having any of that anymore. I can't describe it as any else but gut-wrenching. Feeling like you have no purpose or meaning now that she's gone, it's something that sneaks up on us, and terrifies us.

But nights like last night remind us that we still do have a purpose, we still have a role to play in all of this. There are many people out there who connected with Leah's story, for one reason or another, and we are all that's left of her, so the best we can do is continue her fight. As difficult as it may be for us to sit and write on this blog, we recognize that there may be people out there who are just learning about Mito, or who are dealing with navigating the medical maze, or who are taking care of a disabled child or even have lost a child. I don't think we pretend to know how to do any of this, we just take everything one day at a time, but if sharing our experiences can make any kind of positive difference in someone's life, then we want to continue doing so. And part of Leah's story is also what happens after she's gone, so we now have a new purpose: to tell her story through this documentary, to get the non-profit up and running, and to continue writing in this blog. These are enormous tasks for us, and we can't promise they'll be able to happen as fast as we'd want them to, but we are committed to them and to this community that has gathered around us. We've received so much love and kindness from people all over the world, and now we want to do our part to give back.

Here are some pics from last night:

I know this was a short one, but I hope to be writing again soon.


PS: In our next blog we'll be talking about a recent award we received from the community and share an podcast interview we participated in last week.

1 comment:

  1. Hi, I came here from some online research for my niece Rina's "The Magic Bracelet" Movie. I think you know about my niece, Rina Goldberg, of blessed memory, who also had Mitochondrial Disease. I'm writing just to let you know that one more person (me!) read Leah's story and was so moved. What a beautiful girl and like all of the children with Mito, a person who lived her life as positively as possible, even as an infant. It is clear that the love she received and gave was very strong. The children with Mito are incredibly brave and they live their lives so wisely. My heart goes out to you and your family, thank you for sharing Leah with others.