Saturday, June 18, 2011

Daddy's turn.

Hello everyone. I had a little time in between all the craziness in our lives so I thought I would stick my head in here. There are a few things I wanted to say. So here I go...

I want to thank the 3000 plus friends on Facebook that have been putting up with my posts about Leah. Honestly, I didn't think that this nightmare was going to keep going. I tend to vent there with a few one liners. I did quit at one point but when I did I had about 50 plus emails waiting for me wanting to know how Leah was doing. Most insisted I keep posting, so I did. Then as things got worse, I still wondered if I should post. I began to notice that people...strangers were beginning to become emotionally involved in Leah's situation as well.

In a matter of days, I was contacted by two very good friends of mine in the Star Wars community of fans. One, was "PJ" one of the leaders of the Mando Mercs costuming club and the other was Jason Watson, an amazing artist and prop creator. They wanted to help. At first, I had my reservations. My pride was getting in the way of things. But, I took a look at my baby and knew, I had no choice. I needed help. Rent and all our other bills were due and we were falling behind on our student loans. I didn't want to lose our home. My main focus was my baby of course. Nothing was as important. And my two friends made sure of that by starting an amazing Raffle full of Star Wars props and autographs and so many things that were donated by other prop makers and friends in the Star Wars community. In fact, at the time of this blog post, they have managed to raise between the Raffle and a Donation page close to $15,000.00!!! That is in less than a month! At the moment we have reached 6 figure proportions with our bills. And not all of that is covered by insurance. It was badly needed and the rest is going to survive the rest of this nightmare as my wife and I were having issues with our work. In other words we have been financially devastated by this crisis. And let's not even talk about car issues as well. Things were very gloomy outside the hospital as well as at the hospital.

Who would have thought that the global community of Star Wars nerds (and I'm included in that) would have come to our aid in such a way. Star Wars celebrities like Peter Mayhew (Chewbacca), Steve Sansweet, Stephen Stanton (Clone Wars Animated series) and many more, donated funds or other collectibles. I've never seen such a domino effect of kindness and compassion happen this quickly.

Everyday I open my FB account and I see messages from all over the world from people who are hoping, meditating, and praying for Leah. Or as she is now known throughout the web as "Princess Leah".Leah already has two support pages on Facebook, and two charity events, and a support button that is on over 200 users profile page. I can't even count at the number of prayer groups she has all over the world. All denominations too. People started reposting her story all over the internet. Artist have donated their creativity as well, and they have made patches and posters in support of "Princess Leah"! I've never been more proud to be a Star Wars nerd/fan!
So I thank all of you that have fed my family and kept us afloat and in our home while we deal with Leah's "mystery illness".

In regards to what I feel...I don't even know what to feel. I try to stay neutral in my thoughts. I try not to think past the moment or even second. I lose track of my days. I forget to eat. Because I am always with her. Always. I've come to believe that the best advocate for my child is ME. I am involved constantly with all the meetings that revolve around medical decisions. I have even participated in bringing her "back" when she wasn't breathing and fell limp as a doll in my arms.
My nerves are on hold for now. I try not to think of my own feeling or emotions since it's not about me. It's about Leah. It's about keeping my child alive. We've had so many scares in less than a months time that there is no way to describe what we have gone through. So I use the term nightmare. That is what it feels like to me. I wake up in the morning wondering when I will wake up from this.

There is no doubt in my mind that the doctors are trying their hardest to find out what Leah has. Unfortunately, what she has in not a textbook situation. It is a series of issues. They have all fallen in love with the Princess. In fact many stop by to say hello to our little one on their breaks. The waiting certainly affects me. I pray for a "cure"...a treatment perhaps from her movements and spasms. It breaks my heart. Again, it's not about me, but I'm her father. So I am affected. When I can manage to crawl into her tiny bed with her. I sing to her, read to her and talk to her. I let her know that I am there for her. That mommy is there for her. I tell her that the world is waiting for Princess Leah. I know that she can't understand, but she can feel the emotion in my voice I suspect.
It pains me to see her cataracts. I wonder if she is going to have most of her vision or more problems. Will she be able to see her mommy and daddy's faces?
I caress her as much as I can. Sometimes if I am lucky or the movements subside I rub her tummy and put her to sleep. Unfortunately as of today, she had not slept all night or day. Her movements were so extreme they would wake her. As a parent, it frustrates me that I don't have the power or knowledge to help her. I ask for her forgiveness.

It's nice to know that people care. My family, my friends, her "facebook" aunties and uncles. At times I get frustrated reading peoples messages with their own theories of what she has. But, I understand that it's their frustration as well. They want to see her get better. At times, when people vent to me about how they can't understand why doctors haven't found a cure, I feel like telling them that I feel the same way. But you see, I've probably heard hundreds of people say that already since we've been here at the hospital. Again, I know it's because they don't want to see her here. I've learned to just let them vent. And then there is my family. They worry. They worry a lot and love my little girl. They are frustrated as well, since most live outside the state and far from me. My mom managed to save enough to make it out here. It wasn't easy for her to pay for the ticket, but she did. G-d Bless her.
I was sad that she had to see her granddaughter in the state she was in. I could see it in her face. I could feel it. I felt a little bad since I wasn't really able to spend the time I wanted with her. My mind was always on my baby. I know it was hard for her to leave as well.
As my circle of support began to grow, I found it almost overwhelming to keep up. I was repeating the same thing over and over and over to everyone. Emotionally it's exhausting.I know they want the latest, but sometimes I need a little break from it to regroup. That is why we keep posting on this blog. On top of things, my hours of sleep have been destroyed. I sleep for a few hours during the night and try to sleep for a few during the day. Sleep is like gold to me. It isn't easy for me with all the alarms that Leah has connected to her. Sometimes they never stop. One is to warn us that she isn't breathing, or her heart get the idea. So that coupled with lack of sleep is starting to affect me. Sleeping on the floor doesn't help either.
People get upset when I don't answer their calls. No offence, but I'm either trying to catch up with my sleep or talking with doctors. The other day my brother-in-law tried calling me and Leah had just stopped breathing. She has gone completely limp like a rag doll. I thought she had died. It was terrifying. It's things like these that I have to deal with. There are times when I just need my alone time. Away even if it's for a short while...a shower, where I can regroup and clean the bad day away.
There are good days though. Days where she does nothing but smile at me. Days where I think we'll be out of here sooner than later. Days where I can take her outside to play. Those days seem close somedays and further away at other times. Still, despite the "battles" we fight, we move on. We try to forget our yesterdays. I need to be strong for her. I believe in her. I believe she'll make it through this. The World loves you Princess Leah, but Daddy loves you more! ;)


  1. Thanks for sharing that Zev. It's important to us know how we can help you better and as you explained many things that seems to be details, but are important, we can see the best way of helping you and Frani.
    I take my bucket off to your courage to vent all this out of your chest. Many wouldn't.
    I won't say BE BRAVE or BE STRONG, because you are both being this. Thanks also for understand our 'part', sometimes we want to help and create more trouble than help. But we are learning too.
    Lots of love for you, Zev on your first Father's day. Hard times tough, be proud of being father of such warrior that Leah is. And I'm proud of knowing you and Frani. Thanks for inspiring me being someone better, to put all priorities on the properly places and give the proper value to life and things involving it.
    Everything I can to for you, I will.
    Abra├žos para todos,

  2. Thanks for letting us into your hearts, Zev. Thoughts and prayers to you on this Father's Day, and for many days to come.

  3. What a wonderful Daddy Leah has been blessed with♥