Today Leah turned 1 this morning at 4:18 am, a miracle as we had many doctors tell us that she may not make it to a year. I took the day off from work to be with her today on her special day. It's been very busy trying to coordinate everything for her big birthday party that we're throwing on Sunday 2/19, although luckily we've had a lot of help from our friends and supporters. If you don't know about the party, the invite is here an all who read this blog are welcome to join us! http://www.facebook.com/events/272815919452413/
I'd like to give an update, since it's been a while since the last post. We were told by our neurologist yesterday that she received the genetic tests back, and it has been confirmed as a mitochondrial disease. It's similar to the gene mutation of Leigh's syndrome, but it's a completely new mutation that has never been documented in anyone, so they still don't know what the effects will be or what the prognosis could be for her. I still consider this good news, since it's unknown, there's nothing that says that she'll get worse or better. I have to believe that she'll get better. I have to believe that she'll live, and I truly believe that having that mind set and making sure that she is loved and supported, that it will help her recover. I believe in Leah and I never want her to sense that I don't. Of course, it's hard to hear that she has a disease that is untreatable, and anyone's first reaction would be to think of the worst possible outcome. But, everyone's last day on earth is unknown, so why not think about the positive outcome? Why torture ourselves living in fear of her getting worse or dying, when we can visualize her living, and surviving this disease.
When Leah first got sick, I thought why? Why has this happened to us? We're been through so much is our lives. Even though I'm young, I suffered a pretty traumatic childhood. I lived away from my mother for 8 years since I was 10, and I lived with my aunt who would beat me on a daily basis for things as trivial as not taking the trash out, or smashing my face into a wall and breaking my glasses because I couldn't find something she needed from her bedroom. My father died 8 months before I was born, so I never knew my father, etc. All these horrible experiences, which in the end made me stronger, but where very difficult to go through. And then to find the perfect person and have a wonderful marriage and life together and have our beautiful baby girl and live in bliss for a coupe months. And then she gets sick, and it's like, "Why?!, after everything I've been through, why this? why now? why MY baby?" And i realized yesterday that all those things weren't punishments, they were practice. Both Zev and I needed to go through really difficult experiences in our lives so that we could have a bigger purpose, which is to be Leah's parents. Not only be her parents, but be the best parents we could be for her. And in order to do that, we had to be strong, we had to never give up hope, never stop fighting for her. I know now that I'm not destined to be a great animator, or a great art producer. My true destiny is to be Leah's mom. She is already changing the world, she's bringing people from all over the planet together. She's showing us that human compassion and love for another is still something that exists. She's taught so many people to appreciate their loved ones, to appreciate their kids and parents. And I actually feel lucky and honored to be her mother, and even if we had known from the start that this is how things would have unfolded, we would do it all over again. She is our hero.
I'd like to thank everyone who has been there for us throughout this ordeal, both here on the blog and on facebook. The Princess Leah's Angels group has also been so supportive and amazing in helping us with anything and everything we need. We also have received so many messages and presents for Leah, so thank you to all of you who have done that as well. The avalanche of support we receive and the amount of prayers and positive vibes that are being sent towards Leah is amazing. It's gotten so big it's almost hard to wrap my head around it. Sometimes, we are so involved with her and our own lives that we forget just how many people actually know about her and love her. We received a beautiful reminder from the daughter of one of Leah's supporters in Canada, who is only 15 but took the time to make a very touching video for Leah, and showed us just how many people are thinking of Leah. She also created the Junior Princess Leah's Angels group on Facebook and has rallied 30 people in just a day, and I'm sure it will continue to grow with time. Thank you Anabelle, you are a true angel.
I'll leave with that for now, but for the most up the date info how how Leah's doing, make sure you "Like" her page on Facebook here: http://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901
We will hopefully have no crazy news until after the party where I'll post lots of awesome pictures.
Oh, and if you can't make it to her party, I think we will be streaming it live from our laptop through Ustream, but I'll post details of that later once I confirm it