Sunday, October 27, 2013

Getting back (to) Our Lives...

We decided write about our future intentions on this particular blog. 

Letters, emails, Pm's, Social Media sites etc...these have been the different outlets that we have used to further our daughters fight and now, the fight of others. At the same time, we have also been overwhelmed both in the best of ways and the worst of ways.  
  
SOCIAL MEDIA
"It was the best of times, It was the worst of times." ~ A Tale of Two Cities

When Facebook was just catching fire; this is around the time that your mom or grandmother started to realize that the "InterWebs" was so confusing, but Facebook was "fun" because, now they could keep in touch with you and never really have to go any where else for info about you. 
Of course, that's also what Facebook wanted too. 

Leah caught the best of Facebook, because there were no limitations placed on how many people you could reach. That is when we, along with Leah's Angels (Volunteers that came to Leah's aid and ours)  around the globe swept in and took advantage of the social media giant to get the word across the world that there was a child that doctors could not figure out what she had. The local news agencies found out about us and our connection to the costuming communities and within a few months reporters from all over the world were reporting about "Princess Leah" (despite what was reported, we named Leah after my sister NOT the Star Wars Princess). 
Her story went viral. It was a media mess at first, and if it wasn't for the efforts of the Media Coaches at UCLA we would have gone crazy.
Things got so out of hand that we had to change Leah's name in the Hospitals computers (to Jaina Solo... LOL). I had reporters calling me up on my phone (and my number is private) asking me if they had found out what Leah had and so on. Meanwhile, security had to be placed for Leah as well because we had people breaking in to our room to get glimpse of our Baby. We had several of those. Primarily people that were not "all" there. I remember waking up and there was a woman who claimed that Jesus told her to come and rub these oils all over Leah to cure her. I'm not saying that I didn't believe her, but if you were there in the room with me, you would know what I meant.  She had seen the room number in an interview we did on one of the many TV stations and she decided to come and deliver this message.
Her heart was in the right place, and as a person that belongs to a minority faith that has dealt with prejudice, I try hard to understand others when it comes to rituals and customs. Unfortunately, you have to draw the line when it comes to your daughter who is trying to be in a germ free environment in the Intensive Care Unit. I immediately took care of it and asked her politely to leave. This happened with others as well.  Along the way, we dealt with a few obsessive "fans" of Leah that were trying to contact us and going to great lengths to find where we lived and so on.  Creepy.
That's when we realized that we were now under a microscope. Luckily, we also had people that volunteered to help us keep those at bay. And it sort of helped.

Around that time, facebook became the main place to get up-to-the-minute reports on Leah. Our Blog was now more of a supplement. Granted, we didn't know what we were creating at that time. Meaning, it also became a bit of a chain for us that was hard to get away from, especially when we needed that time to ourselves. There was a duality. On one hand, there were people donating via a Facebook auction that got started by a member of the costuming community and friend named P.J.. He raised more than a few thousand to help Leah and us with our Hospital Bills and to cover things like groceries and gas as well. This would never happen without Facebook (we're still talking about the Facebook of 2 years ago). We had another friend start a donation page too.
For us, it was about connecting to our close family and friends that lived outside of of L.A. too. We didn't have to go and repeat all the details over and over again. Some were upset about this. They wanted their own personal report...they were family. What they didn't know was, we were getting a few thousand emails, Letters, Pm's, requests, etc and it was starting to overwhelm us again.It was also emotionally draining to keep repeating some of the scary details that were happening to our little angel. 
Eventually, things relaxed a bit and we would only deal with a few hundred, however, it was taking a lot of our time away from Leah to answer all of these. We had to limit our time and find a way to regulate things and still keep people informed.  It was really about LEAH all the time. Meaning, Frani and I were never Facebook fans.But, we were so desperate to find out what was going on with Leah. What was it that was causing Leah to have all those seizure like movements (among other things we won't get into here)?

As time went on, Leah's main support page went from having a few hundred to a few thousand. Leah's story was touching the hearts of many around the world.
We understood, how social media was helping us, but it was also causing privacy issues that still continue today. 
Eventually, celebrities got involved  and George Lucas. They catapulted Leah's cause even further and with the help of several amazing costuming groups it kept the motor running. 
Meanwhile, we were still dealing with a few people that were not mentally well, that were professing that some Deity contacted them or that Leah had telepathically communicated with them and they NEEDED to see Leah. Some told us they did it via "remote transmission".  So yeah, it was a little weird for us some times. Mind you, this is when Leah was still living.  We even had someone claim that got Leah out of her coma (they professed this on their fan page!)...which was interesting being that she was in a drug induced coma and Leah was "awakened" when the drug was taken away. 
As time went by, others joined the cause, and re-ignited the fire. People from all over were praying for Leah still, regardless of what Faith they were a part of. We connected with people from all over and of course we were curious to why they had made that connection with Leah.
Some became like family. Others, we were close to became even closer to us. And, like in many cases you really do find out who your real friends and family are when things like these happen.
All in all, we never really had too many problems aside from a few people taking advantage of Leah's situation.  This is something we had to let go of because at first, we were confused and hurt that people would take advantage of a child in need. They will have to live with themselves. 

We never expected things to get so BIG with Leah. Never. We never expected people to continue to work for Leah even after two years of ups and downs. No one was EVER expected to fight by our side even when Leah was finally diagnosed with Mitochondrial Disease. I remember people posting about it, and most were of course, not happy with it. A few were making matters worse for us emotionally because they were posting about how bad the disease was, as if we didn't know it already. The diagnoses was a nightmare for us. But, as we usually did, we pulled ourselves back up and those Angels that fought by our side were the turbo to keep going. We will never forget those that kept the fight going even when we were emotionally exhausted. 
As time went on, those closest to us, began to help insulate us. They shielded us from those trying to take advantage of us, or keeping people away so that we could regroup from the latest trip to the Intensive Care Unit. 
By then, Facebook was starting to implement more rules regarding privacy (or rather lack of privacy). We had already learned how our privacy was being invaded, but for Leah's sake we tolerated situations. 
Meanwhile, we were dealing with this dreadful news and trying to cope for Leah (feel free to read the blog if you haven't). Again, Social Media helped, but, by this time, we were so incredibly emotionally exhausted from Leah's trips to the E.R. and also trying to balance out our crazy careers in the Entertainment Industries, that we felt it necessary to start regulating and weening ourselves away from Facebook.  Our posts were less frequent and we began to try and use the blog again for most of the info on Leah. We were adjusting to things.  Frani was climbing the ladder at work and making "it" happen. She went from an assistant to now being a Producer for a hit PC game. I was lucky that I was able to do my music and voice-overs from my home when I could get away from Leah's smile (and unfortunate medical issues). 
 
By the end of Leah's life, we were fortunate to have a great set of Nurses that cared more about helping Leah than getting on the internet or arguing about their pay.
So life was starting to move forward in some ways; and in other ways, it was still the same, especially for Leah. Leah seemed as though she was fighting hard many times. In fact, doctors were always amazed at her strength.  We also drew from Leah's strength as parents. I think many people around the world did, as we are now finding in the new documentary about Leah and those that connected have.

So where are we going with this (aside from teaching others in our boat how to deal with Social Media sites)?  

We have decided that we will be taking a long break from Facebook. Not so much with the new non-profit Foundation we are starting, but with us. We don't think we're that exciting to begin with so we will be regulating our posts to being about those wonderful people out there like all our Volunteers (we call them Angels..thanks Mary for starting that page) and mostly about the children that we must STILL continue to FIGHT for. We've learned a lot in these 2 plus years (it feels like ten). And one of the MANY things we learned too, was how much we need to have our own privacy...so that we can heal from our loss.

HEALING

As we wrote in the above, privacy will be a key ingredient in our future plans. But we also need time to re-group. That means healing above all. And it also means getting ourselves into a position where we can take care of ourselves...our hearts...our souls...our love. Corny but true.

Healing doesn't mean disappearing completely, it just means, moving to the side a little to let ourselves breath and give others a chance to do the same for their children.

We made the mistake to just keep going at full speed with the Gallery showings, Foundation stuff, the documentary, that has taken us all over Europe and will take us to other places as well. But, I think everything sort of hit us like a ton of bricks while filming our documentary in ROME. I hadn't really seen Frani let go. I joined in. We both broke down. I can't imagine what the neighbors were thinking. But, looking back I'm glad we did. You see, it was the first time we had to really process things. We had entertained ourselves with all these events that we were using to keep the flame going; NOW for the other MITO kids. We wanted to Pay-It_Forward! Our hearts were in the right place and we were successful with these events and such, but, our lack of processing time was our emotional downfall. 

There we were. In one of the most beautiful countries and cities and we were clenched in each others arms...crying...dealing for the first time with the intensity of reality...nothing we were doing would bring Leah back...nothing. 
It had been hard enough at the funeral and dealing with hundreds of people wanting to be there for us, but we also found that even those close to us, were also trying to deal with her death, but they were turning to us for some consolation.  Looking back, we should have put a stop to this since we have always appreciated those that stuck with us through think and thin, but it wouldn't have been selfish to ask them to get counseling rather OUR shoulders to cry on.  We needed our space. This was and is an indefinite situation.   

So, we'll be involved from the Foundation level with social media, but as for our own personal lives, we'll probably go back to using our blog to share a few things from time-to-time.  We figure, our friends wouldn't mind using that old fashion thing called email either. 

What you WILL see on this site...

We'll be showcasing other Mito Families and their children, keep you posted on the documentary and those we interviewed via this blog and Youtube. We'll be around, but we'll be more like shadows than the real stars our... MITO kids and volunteers. They are the heroes... not us.

We have a lot of work ahead of us...

We will also be opening our Foundation page sooner than later. Our foundation will have information for Mito families on several subjects that revolve around having MITO. Including special "capsules" to help them out, interviews with specialists and doctors about MITO and a few therapists that will help us/them cope with the constant emotional challenges that MITO families have to go through.

The "May The Force Be with Princess LEAH" page on facebook will eventually turn into the Princess Leah Foundation page.  We'll spotlight other families and volunteers there briefly and then lead you to this blog for more info on that event or person. 

This blog will still be called the same and attached to our official PLF website. 

We're still learning about things so you may have to bare with us a bit while we try to convert all our ideas into one fine oiled machine/foundation.

We are not officially set as a non-profit at this time, however, you are welcomed to send in donations to the 

United Mito Disease Foundation or Mito.Org in Leah's name. 


If YOU would like to become a Volunteer please contact us at:


We'll have one of our Angels contact you and let you know how you can make a big difference in a childs or adults life with MITO.


Thank you for taking the time,
PEACE,
 Zev & Frani

Lighting a candle for Leah at Westminster Abbey

on our way to see the Queen's crib

guarding

sketching a cavalry guard

The National Gallery in London

Zev's drawing at the Tate Modern 

We remember Leah and all the mito angels at Tate Modern

Leah doll with us at the Eiffel tower

A Leah doll we received from one of Leah's supporters, she traveled all over Europe with us

Educating people about mito in Versailles

Zev and Frani on the Ponte Vecchio

Florence

The Colosseum in Rome

At Marina Grande on Capri Island

Chair lift to see the entire island

Il grotto azurro in Capri

Barcelona

Meeting the 501st Spanish Garrison in Madrid

Zev and Mireia, a 3 year old with mito

Maria, her mom

Frani and Maria

Leah's memory lives on

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

Friday, July 26, 2013

Camping trip, pt 2 - by Zev

Continuation..

I turned around and proceeded to walk down the alley that was created by all of Leah’s mourners. A few hundred had made it out, but admittedly, my eyes were fixed on the ground and my mind was speaking to Leah. I promised her that I would never stop talking to her. She was my little confidant and although she never spoke to me the way most people do, I “heard” her.

As we made our way back to the meet and greet area, I was so moved by the kindness and love from those attending. We later headed to the reception. The reception was bittersweet because as the Rabbi pointed out, Leah had a way of making us feel things simultaneously. One could cry and laugh within the same minute. And that, was true of this event. A dear friend of mine, James was taking pictures. He had flown in from North Carolina (thanks to Alana’s kind heart) and wanted to help me document everything as I had started. Truthfully, I struggled with having a camera now on me, but, I think that in the end, it was better because most of us were sad, but Leah was being felt there as well, and most of us were celebrating her courage and short life. Of course there were tears, but they were quickly gone by thoughts of her smiles, and “Isms” (as I call it) and you couldn't help but chuckle. This was so evident with the photos he shot. There was a stupid part of me that was almost upset that everyone was smiling. I know, stupid. But again, Leah did that to people. She brought out the best in everyone.  People came from all over the world. For those that made it out, I can’t thank you enough.

Afterwards, it was not the best of times. This is where the sadness came crashing down on us and the shock of not being able to walk into her room and just hold as we did set in hard. I was hoping it was all a dream...no, it was a nightmare. But no matter how many walls or doors I punched, Leah wasn’t coming back. “Leah, what do I do now baby?” I asked. “Where do I go from here without you Princess?” I asked her to please help me.

Frani and I tried to be there for each other. We were never both “down” at the same time. We made a pact that if one of us was down the other would bring them up. And we kept that promise. The mornings (even til today) are the worse for me. My daily routine was getting out of bed and getting a report of Leah’s night and then I’d crawl into bed with Leah for a few before the therapists would make it out.
Towards the end of Leah’s journey we’d get enough courage to take her out for walk more and more often in her little hybrid Wheelchair/Stroller that one of Leah’s angels (Phil) got her. Those walks were magical and I thank Nurse Desi for pushing me and also adding to that courage. (Desi,I miss you my crazy Jamaican nurse!---Your faith in God was contagious too.)  
Yes, it was hard with Leah. I mean, she was the most fragile cases you could find. She could not move on her own. So in a way she was as close to a quadriplegic as one could be. Her sight was not the best either. She needed tubes to feed, and drink towards the end and catheters to  help her pee and such. Like I said, Fragile. And truthfully, we kept a lot of that out of our blog. Not because we were trying to hide anything, but we didn’t want to worry people out there more than we should and we wanted to start concentrating on the positive not the negatives.
Every move out of Leah’s bed and area was a risk. But, that wouldn’t be fair to her to just leave her lying in bed for most of her life. We had to push ourselves aside and go  further and further to as normal a life for her as we could, and if that meant building something specifically for her or rearranging whatever... we would do it. I was always happy to tell Frani when she’d get home about our little adventures outside of Leah’s domain. And I was also happy to see the BIG SMILE on Frani’s face as well.
But now, my own routine was taking away from me as well.  

Frani and I had to get out of town for a few days. Our phones were constantly ringing and emails piled up. We didn’t want to seem as though we were ingrates, but the pain of losing a child was indescribable. Plus, every time we’d speak to someone the floodgates would open and it was hard; VERY VERY HARD to try and heal that way. So getting out of town was probably the best thing we could do. And we were right.

We packed our camping equipment and headed out to Sequoia National Park. The trip took a few hours and it was perfect for us to use that time to help heal a bit and put things in perspective.  Of course, once Leah’s CD’s came on we began to cry our eyes out...but, how could you not? You know how songs trigger memories...and boy do we have a lot of memories. We cried, we laughed, we cried, we laughed and most of all we tried to make sense of things, but that was not easy or possible at that time.

Once we arrived, it was EXACTLY what we needed. I was reminded of the works of Emerson Waldo. If you don’t know who he is, you are missing out.
The air was pure, the trees were abundant and seemingly cradling us in their grandeur. Roxy was running around in circles in total excitement. Frani was a pro at pitching the tent and I took the food and stuff out.  I looked out at the mountains and began to thank God for creating such an amazing place for us. Most of all it was quiet. No phones, no iPads, no appointments just us and the earth around us, reminding us that there was more to life than, that which we only saw with our eyes.

Frani and I walked around just feeling the cool breeze and absorbing the beauty. I always feel at home out here. At times, we took little breaks and during those breaks we’d talk about our plans to further our reach and continue the fight against this ugly disease that is taking so many children's lives. We also, made promises to ourselves. We promised that no matter how dark life was that we would not let it take us over. One of Leah’s names was taken from Frani’s Italian side (her dad’s family, as the other side is Irish). LUCIA means light. Leah was now our “light” and she would guide us as we guided her. We owed it to her to keep that light burning as well.
Frani would sporadically thank me throughout for taking care of Leah when she was at work. I reminded her, that I was not the only one taking care of her. Desi, Luis, Jen, Bianca and Richard were by our side and they truly loved her...and we, them! But, yes, I did appreciate her words and also the fact that I could work from home occasionally, and be there for Leah. I appreciated Frani for her strength and love for Leah and I. I know it was very hard for her to go to work every morning, but as I stated, Frani works for an amazing company that was helping us out and supplying the medical insurance we needed since my Union wasn’t really helping with that, sadly. Frani kicked butt no matter where she was; always making calls for us and also the weekends were ALL her. We compliment each other so well. Thanks babe.
After camping for a few days, it was time for a bath or shower. I was looking like Grizzly Adams and I couldn’t handle my own odor EEECK!. We found an inexpensive little Motel called Gena’s Sierra Inn. It looked like something from a movie. It was a little worn but well kept. As we approached the door, we heard country music blaring out from inside the bar/restaurant. I began to wonder how a long haired Jewish hippie from L.A. would do in this crowd. Frani rang the doorbell and a dark red head popped out from the side building in a sleeping tee letting us know that we didn’t have to ring the doorbell, “That’s just for night time. You can walk in.”

We found our booth inside and a nice woman began to take our order. On the wall to my right were three pictures. All of the people in the pics were in the military. I also noticed a folded flag on the side. I asked about the pics and we were told that these were the adopted children of the owner and that the one on the far right was killed in a hate crime. Of course, my heart went out to the owner since I knew the pain of losing my own. I shared our story with the waitress and within a few minutes the owner came out to greet us and offered her condolences. Before we knew it, we were making an amazing connection with her. I laughed at myself for the thoughts I had and apprehensions about coming here. You see, it doesn’t matter what faith you follow, or what your accent sounds like, or how you look or dress...it’s that HUMAN and SPIRITUAL connection you make with people that counts. Before we knew it, she was inviting us to Karaoke night at the bar. “I wanna treat y’all to some moonshine!” she said excitedly. Frani and I looked at each other and read each others minds (why not?) “SURE! We’ve never done moonshine.  “Oh, you are goin’ to love this moonshine!” She boasted.  

Frani and I took our much needed showers and took a nap. After, our naps we got ready and headed next door. The country music was now louder. Now, don’t get me wrong, I might be a rock musician ( I played for many bands professionally in my younger days) but I can appreciate all kinds of music. I kept hearing the same voice singing songs and wondered who had such a great voice? As we walked in I realized that the voice was coming from this one 40 something woman. She was brilliant! Better, than most I’d played with. What the heck was she doing here? She should be out there sharing her gift. I walked up to her and let her know as well. She smiled and patted me on my back. It wasn’t long before Gena the owner of the establishment was prepping up our drinks...MOONSHINE ANYONE?!?!?

The drinks were slammed on the bar. I looked at Frani and she at me, we chuckled and toasted to Leah. All I have to say is...VERY TASTY for the first few seconds (it was strawberry flavored), and then my chest and throat became inflamed like the Space shuttle’s booster thrusters and then BAMMMMMM!!!!!!!!!!!  Wow!  I had my share of drinks in my rock band days and I could handle most drinks, but no one ever prepared me for the KAPOW I felt with this. So, naturally, I had to have another. Yep, this was our  time to unwind. I quickly chased it down with some Smirnoff vodka girlie drinks she offered.  Gena shared some of her own stories with us about her son that was murdered and we shared our stories. We hugged, we laughed, we cried and we connected.

Then it was over to the Karaoke Bar!
Frani LOVES karaoke. She has a beautiful and very girlie-breathy voice. She and I toasted again to Leah with a few more of those Smirnoffs. Later, she sang a few songs to me and melted me to no end. Frani has that gift. She can look at me with those big brown eyes of hers and possess me. The night went on and we made new friends. Gena and her crew made us feel so much like family. We were hugged and made to feel as if we always belonged there...and for that brief moment in time, we believed we did.

Then it was off to our next stop. We decided to head towards Nappa Valley, home to many of the worlds most successful vineyards.  We took a look-see around and then went to go find a spot on this mountain that had a beautiful lake. We were also going to check out the Supermoon! And it was BRILLIANT!

To be Continued...










Sunday, July 14, 2013

Until we meet again Leah - Zev's post


My View

I really don't know where to start. I've been hovering over my computer now for weeks thinking about what I was going to write about in this blog. How I was going to make all this craziness in my head make sense.
Frani has been asking me to write something, but it's been hard trying to sort all these emotions out in my head. What I said at Leah's funeral services was true, I am lost. How does one go back to living a "normal"  life after this?

I was the stay at home parent. I  could work freelance, but Frani had the job with the health insurance, and it was an amazing opportunity for her. I would dare say even a dream job. I was fine with this. Still she managed from her work to make sure I was on top of things. She would always meet me at doctor's appointments, and make needed calls or battle with whomever she  needed to from her desk. On the weekends she would take command and that would manage to give me a bit of a break . There were even weekdays where she would cover for the nurses that would not come in and stay up all night with Leah. I couldn't ask for a more dedicated mother.

But, I was always " on". Nurses got to go back home, Frani worked a hard but fun job; always coming home with a smile on her face, and I... I was always here. There was never a break. I know, it sounds like I am complaining, but I'm not. It's just the way things were. Leah was a very,  very medically fragile baby. More so than most people thought. But all the above being said, I loved it. I loved that I was able to walk into her room at any minute and simply lay next to her. She had the yummiest baby scent. How I  miss that little smell of hers. Admittedly, I keep several of her clothes next to me (unwashed) so that I  can keep smelling her.

My whole day... My whole life revolved around Leah. It wasn't easy. Some days were tougher than others, but I never really complained about it because I knew how blessed I was to have her with me. Frani, tried to give me credit when able, since she began to see that people were not aware of how intense my role was in all of this. I appreciated that, but as many of you can see, I wasn't one to have  pics taken of me ( I regret that), I was the one telling Leah's story through pictures.
I had an amazing team of nurses at my side as well. They taught me so much. I think the last team we had was incredible. In fact, I keep in touch with most of them. We will always be connected through Leah.

Frani's mom became my hero. This was a woman who also had dealt with great loss. You see,  Frani's mom was pregnant with her when  her father died in a freak military accident. Frani's mom was left alone with one toddler and baby to care for. Throughout most of her life she had battled with depression and anxiety. Yet, this woman made the time to relieve me or even substitute for nurses when they wouldn't show. She would get out of work at 11 pm and sometimes cover for us until 6 am! She even went so far as to take nursing classes! Sometimes she would have to battle with the school to allow her to take certain particular classes that were specifically for Registered nurses. She had a hunger to learn as much as she could to help Leah. I salute you grandma!

The house today is full of a dreadful silence. The sound of her vent machine taking her breathes and the tiny beeps made when she swallowed are gone.  No alarms go off. Sad, that I should  miss such things. I  have no calls to make to doctors. Therapists no longer visit. There aren't any deliveries being made  by the pharmacy or oxygen delivered as well. My house was a busy place. Now, I  share my time with Roxy. Roxy was to be Leah's service dog. Roxy is now My service dog.  It's been hard on Roxy too. She wanders in and out of Leah's room, and the other day she walked up to a poster we had made for Leah's funeral and kissed it. She misses Leah too.

The first couple of nights were terrible. I found myself laying in Leah's bed, crying my eyes out. Her bed was just the way we left it from her last outing. I hugged all her pillows and stuffed toys as hard as I  could. But it wasn't enough. It wasn't Leah.
I laid there in the dark, on her bed telling her how much I missed her, but how happy I was that she was finally free. And then I felt something on my chest... It felt the way it did when I use to hold her in my arms and she'd snuggle into me. And, at that point, I realized it was okay to put my sane and logical side away, and enjoy this gift, this alone moment with my daughter. And it was beautiful.
It is hard. Very hard... And painful, but I know that Leah can also be my strength. After all, she taught me so much from seeing her own struggles. At this one moment, I let my rational mind and spiritual mind make peace with each other and for the sake of my own sanity, I will believe that she is in heaven, and that she is running around smiling as she once did and looking after us. I have a guardian angel, and her name is Leah.

I can do anything. That is how I feel now. I have learned so much from that little girl. Things that bothered me, no longer do.I see things differently. My perspective has been altered for the best. It's as if I have been given new sight.

The other day, Frani and I were hanging out in Leah's room trying to organize her medical equipment for pick up the next day. Frani was seemingly staring away in a slight daze. I asked her if she was okay and then she pointed towards the closet where a few of Leah's dresses were hanging. "I never dressed her up in her sleeping beauty dress.", she said. I looked at the dress and said, "Frani, don't feel bad...that really isn't just a dress". Frani looked at me somewhat perplexed. I continued, "that dress is a symbol of a mother's HOPE & OPTIMISM... you believed in her enough to buy her that little dress." After all, Leah had won many battles already.

The last days of Leah's life were almost the same as they usually were at the hospital. In fact, we never felt she wasn't going to make it. It was only a few hours before her passing that the doctor came in to let us know that the latest therapy for her lungs was not working and that we could escalate her to the next phase. Not knowing what this meant we agreed but, we were cut off by Jamie, Leah's nurse and super advocate. She began to explain the painful process that would not change the inevitable.
Weeks before, I had a very painful talk with Frani about my life on my father's ranch. I explained to her that I loved my horses, and the rest of our little animal community. I always butted heads with my dad, but I respected the fact that he cared so much for them. He had even saved an eagle that was injured and took in a wild hog he named cha-cha, because she walked in such a funny way as if she were dancing the cha-cha. I think he cared more for them at times than me, lol.
The point I was trying to make (and struggling to do so with such a lack of eloquence), was that all living things have a right to battle for their own lives when in danger or sickness, but sometimes there comes a point where the suffering is so intense and the outcome was so tragic, that we had to intervene with the hardest of all decisions. And then my body began to shake, and I told her if the day should come where we needed to make a very difficult decision with Leah, that I would never want her to suffer.
Frani and I looked at each other and knew it was THAT time. I'm not sure at what point, but time and space didn't seem to matter. It was as if I were in a dream... or nightmare. I briefly became disconnected in order to make the most difficult decision of my life.
This was our last time to be with our little fighter or as the world knew her as Princess Leah. This was the last time I would feel her little hands in mine, the last I could hold her, sing to her, caress her face...it was the last for all that.
Frani called her relatives and mine to let them know.

Frani's mom arrived and my son Nic (from my first marriage) and I told them that I wanted to give us all a chance to be with Leah alone.
All of us had our time with her. And then I asked them to let me and Frani be with her until the end.
The nurses turned off the sounds and monitors and began to watch them remotely from outside the room so that we could not be bothered while spending our last moments with Leah. I took my cell phone out, and as I  usually did took many photos of her. And then my wife began to talk to Leah and sing to her as she would do during bed time. I switched the cell phone to video and recorded this beautiful and emotional moment. Technology had become my friend and ally in telling the story of this princess, but this time I was selfish and wanted this for myself.

My wife laid on Leah's left and me on her right. Frani had the privilege of feeling Leah's heartbeat. We let her know that one day we would be joining her and that we would always keep talking to her and even sing to her. We promised that we would continue the fight against Mito. I  will keep the next minutes to myself, but know that she gently faded without pain or discomfort. She had fallen asleep, never to wake up again.

Frantically and in tears,  I disconnected all her tubes from her body. No more wires, no more... You are finally free Leah. The pain was so intense. It was a different kind of pain. One that I had never felt before.

I turned to her iPod that was sitting on one of the equipment shelves behind her to pack away. It was one of her favorite things. She loved music. The battery had been discharged and was off charging. I grabbed it and put it on the cot where Frani and I slept next to her hospital bed. All of a sudden it turned on! It was playing an Enya song. Frani and I looked at each other. This thing was off, I know for a fact it was.

Within minutes of her passing, we were met by the social worker who then had to deal with our tears and heartache and ask us questions that unfortunately had to be asked, ( like where she was to be buried and a plethora of other uncomfortable questions) . Thankfully our Rabbi was called and our friend and hospital pastor (the two work together) and they were our rock keeping us up and standing through this next phase. Gila the case manager from the Chai Lifeline foundation was also there;as she usually was. Gila had become family. She always made sure that we were fed and that we were taken care of. She quickly teamed up with the rabbi and I  found out later they managed to get the entire funeral services taken care of.

We had to sign papers and go to Hillside funeral and sign some more papers. The funeral home was so amazing, and treated us so well. Rabbi Bar Lev and Pastor Lori or both went and so did Gila. The funeral home informed us all was taken care of. Apparently, the Jewish community had come to our aid.
We were also told that a group of women had come forth to ceremonially wash the body. It is called the Havre Kadeshe, or burial society. The Rabbi says prayers over the body as they wash it. Leah would be wrapped in white linen. You see in Jewish tradition we don't embalm the bodies. We also bury our loved ones as soon as possible. I am not an orthodox Jew (I have tattoos and wear my hair long, and I don't follow dietary laws... I am rebellious like that) but I have a deep appreciation for tradition and rituals. In fact when my father died of Cancer my brother and I partook in the cleansing of his body because there wasn't a burial society where he lived. I remember the rabbi back then, telling us that doing this good deed or Mitzvah, was the ultimate kind of one, since it is the one that can never be returned.

People that belonged to a special private group started by a wonderful woman in Brazil named Mary, called the Princess Leah's Angels came to our aid as well. Rebeccah offered her house for the reception, Phil made sure we were left alone, and kept the masses informed and drove us to the services. Jennifer and her husband Bruce made our posters with Leah's beautiful face. Bruce and Phil did me the honor of taking her to her burial site as well. Alana  flew in another member James from North Carolina, Anabel made some mini posters, Tracey and her husband flew in from Washington...and the list goes on. This was only a smidgen of one of the finest group of people you can ever meet. I have to thank them all for there support and love. So thank you for being my family.

The services were beautiful. Most of you have seen the video. Did you see that little anomaly flying around some of us? Again, my rational mind and spiritual mind were at war. Being a cinematographer, I thought it was a dust particle stuck on the lens of the camera or a reflection. Well, no one saw a reflection when I was up there. And the camera was checked and there were no dust particles in our around the camera. In fact, the funeral home had never seen this before. Leah, was that you? I'm going to allow myself to say yes.

The hardest part of the services was when they were placing Leah's casket in the grave. It hit me so hard. This was it...I would never see, feel or hear her, ever again. As I ceremonially took the shovel and placed the dirt into her grave I felt excruciating pain and sadness. And then I asked God why? Anger hit me as well and I took that shovel and stabbed the ground so hard I almost broke the handle off. I could barely stand.

to be continued next post...

Only a few hours before Leah's passing. 1:20am  Hope still lingered at this point.

I shot this candid picture of Frani smelling Leah's clothes. It was hard to hold back the tears.

We were still in shock. 

A few of Leah's new dresses. The Sleeping beauty dress, or as I called it "The symbol of Hope a mother had".
Trying to keep our heads in the moment, planning a dreadful day of funeral services for our daughter. Frani always the artist draws Leah. 


Thursday, June 13, 2013

RIP Leah Raquel Lucia Esquenazi Feb 17, 2011 - June 6 2013

As many of you know by now, Leah passed away last Thursday morning, June 6th at 7 am. For us as well as many who followed her story it was a shock, and the pain of her death leaves both Zev and I with aching broken hearts. I was in the middle of writing an update to her page when she started having issues that ultimately took over her body. I'd like to share those thoughts with you now and then continue writing about events that followed.

"June 6th, 2:14 am

Leah was laying prone for about 3 hours but continues to desat every few minutes. They bumped her oxygen down to 70%, as opposed to the 100% she was getting through her vent before, which could do damage at such a high percentage. At home she usually is on 30% and keeps her saturation at 100% on her pulseox, but she's been on 70% and her sat are still only 88-93%, even on that much oxygen.
They laid on her back again, but its not making much of a difference. I'm too scared to go to sleep since things are so up in the air with her breathing right now.
The docs just came in and they want to check her oxygen in her blood by doing a IV blood gas, but if that doesn't tell us enough, they'll do an arterial blood gas, which they would have to poke her for. They are calling the attending now to let him know what's going on, while they try to fire out what the next steps are.
Tonight and today actually have been really stressful. She had the surfactant medication treatment done at around 3 and she actually tolerated it pretty well, but our doctor also told us that her lungs were looking worse than he's ever seen them which could be attributed to infection since shes had fevers every day since Sunday.  but its developed into acute respiratory distress syndrome (ARDS) and that means her lungs are really weak and aren't ventilating well or expanding fully. The surfactant should help them expand more though. She been so tired , I think because her heart rate is high, 150-165 bpm and then her lungs can't expand fully, plus her heart was having some issues a couple days ago because she had gotten too much fluid, and her heart is already overworked and too thick, so it working harder is not gonna help her.
At this point there is no word on when we'll go home, but hopefully she'll get over this pneumonia soon.
I had been complaining to Zev about the ugly rough hospital gowns they put her in and how I wanted to make her some custom prettier ones. We went out yesterday and bought some pretty fabrics, materials and a sewing machine so that I could work on them. Last night I worked on one until about 3 am, and tonight as well, I just finished #2. I've never sewn anything in my life, but luckily the machine came with instructions and I have common sense so I learned a lot on the first one (aka made a ton of mistakes) then made the second one almost perfect. I have another 5 to go...but I won't tackle them tonight."

At this point the attending had come in to see Leah. She was desatting more, this time her vent settings had gone up to a peep of 12, a respiratory rate of 32 and she was getting 100% oxygen, but she was still only able to get her sats to mid 70s-mid 80s. The doctor looked at us and told us that at this point, he really didn't see another option other than escalating and giving her an arterial blood line to monitor her blood gas and give her more blood pressure medication. She was sleeping restfully with her heart rate at only 119 bpm, and her blood pressure was extremely low and we sort of looked at each other and didn't know what to do. We didn't understand what the doctor was saying to us, couldn't see that his option would not stop her from de satting, since it wouldn't do much for her lungs and 100% was as high as they could go on the O2. One of the nurses who has been caring for her for the past few nights as well as earlier during her hospital stay, was Jamie. She spoke up and told us "wait, do you understand what this means? It's a higher form of life support and what will happen is that they would do this invasive procedure where they insert a line into her groin, so it ill be very painful for her. This will only allow us to do so much, and probably wouldn't change her respiratory status. If you do this, you need to be the one who makes that decision. We can't do that for you, do you know what I mean?"
Zev and I looked at each other and excused ourselves to discuss privately outside the room. As soon as we got to the hallway outside the unit, we both burst into tears because we knew that we had gotten to this point. This point in time that we both was coming someday and always avoided speaking of, because we never wanted it to be an option. We never thought it could be an option, but here we were. Faced with the most difficult decision a parent can ever make. We had promised each other that if it ever came to this, we would do what was best for her, not us. We had to evaluate the situation in terms of what would cause her the least amount of pain and not keep her going just because we wanted to keep her with us. It wouldn't have been fair to her for us to subject her to more pain, all for what? It wouldn't have changed the fact that her lungs were not able to keep up anymore. She would continue to desat, like she had been for the past 8 hours, and keeping her at 100% O2, would eventually become toxic for her as well. It wouldn't change the fact that her heart was failing as well, and it would drag out longer and probably be more miserable for her. The doctor came out to talk to us and once again we asked him what else we could do, if we had any other options at all, but he shook his head, no. He told us that they could make it painless for her and we could take some time, to say good he to her.
I called my mom at 3 am. I told her the news and that she needed to come down to the hospital to say good bye to Leah. I called Leah's brother as well, and they both came over. One of Zev's close family members lives on the east coast, but had been in an argument with him for several months so they hadn't spoken. I thought it best to put that aside and inform her of what was going on, even if she couldn't be here in person to say good bye, I didn't want her to find out something like this through Facebook, so I called her. I was in shock when I the response I got from her was "Well I also just had an operation for a tumor they thought was cancer, and I almost died and thankfully I'm ok, but my friend had to come from another state to take care of me, blah, blah , blah" I couldn't believe that I was telling her my 2 year old baby was dying and she was comparing this to her own near death experience, after having lived for over 7 decades. I cut her off, I couldn't continue to listen to her go on and on, "Look, I don't have a lot of time. I just wanted you to know what was going on" I really wanted to tell her that I didn't give a fuck what she had gone through, MY child was about to die! How can someone be so cold that they don't even pretend to be sad about it? Rather, they think somehow their problems are comparable at all and actually bring them up at this time? Her response, " Well, I wanted to let you know what was going on with me too. Thank you for letting me know" That's it. Leah's own flesh and blood. Family really is more than bloodline, as the Mandalorian proverb goes.
Each one of us took time alone to hold Leah and be with her privately to say good bye. She was sleeping so peacefully and I loved the feeling of her little head on my chest. We were able to spend about 3 hours with her,  before telling them to begin the process and start lowering her vent settings back to what they had been at home, and to start lowering her oxygen down from 100. They gave her some morphine so that she wouldn't feel any pain when the CO2 became too much for her lungs. She opened her eyes for a few minutes before this started though, and we got to look at her big beautiful brown eyes one last time, as if she knew that's what we needed. The morphine made her fall asleep, as Zev and I both got into the bed with her. Zev on her left, and me on her right, we asked for everyone else to leave the room so we could be alone with her, and just held her between us. We sang to her, her favorite songs; Zev sang Twinkle Little Star and I sang Dream a Little Dream. We caressed her and gave her kisses all over her face and told her how much we loved her. After about thirty minutes, the nurse came in to tell us that her heart was slowing down and it was getting close. I was pressed up against her so tight, I could feel her heartbeat on my chest, so I knew it was slowing down already. Something that gives me comfort is that she could feel my heartbeat too, and I'm glad she got to feel that until the end. We saw her lips turn paler until they were bluish and I felt the last few beats of her heart against mine, then she took one last breath and was gone. She had left that body and was now free from all the constraints her physical body had put on her. The doctor came in and heard her heart on the stethoscope and confirmed her passing, 7 am. At this point, Zev was desperate to hold her, and started removing all the tubes, wires and things that had kept her going so that he could hold his baby girl, like a normal child, without being attached to anything. Then I did the same we both sobbed like children, holding her tight, heart broken and crushed from losing our only child together. The only child we would ever have naturally, who made us try so hard for her. I felt as if someone had removed a large piece of my chest was forcing it down my throat, I couldn't breathe from crying so hard. After everything we did for her it still wasn't enough, but we knew this day could come, we were always just so optimistic that we thought it would happen many years from now. Not so fast, or so young.
Zev cut off her 2 pigtails and saved them in a plastic baggy. I never had wanted to cut her hair, other than her bangs, because I always said I was waiting for a special occasion. Now I'm glad we waited, since her hair was so long and we kept it. The nurse came in with a little ceramic putty to make a mold of her little hand, and we covered her with a blanket. She wasn't in there anymore and we were both afraid of how she would start to look and didn't want that memory of her.
I'm thankful to Leah for having met so many amazing people during this journey with her, because its those same people who were by our side guiding us through everything that followed her death. Gila, our social worker from Chai Lifeline, the Jewish organization that helped us with a variety of things these past 2 years, including food while we were in the hospital. She showed up less than an hour after i called her. Rabbi Pearl Barlev, as well as pastor Lori, another of the chaplains at UCLA, they were with us for the remainder of the day until we went home. The hospital social worker, who walked us through all the feelings we would have when we got home, and all the funeral arrangements. I wasn't in the frame of mind to even think about arrangements but  thank G-d for Gila and Rabbi, they took over and started calling places, finding out where we could go. Rabbi knew of Hillside memorial, a Jewish cemetery and mortuary that was close by, and she was able to get them to donate all of the costs of burial, services, casket, etc. The Jewish community has a program for these kinds of events and they stepped in and helped us, which Zev and I will be forever grateful.
That afternoon, we went home, without her. Standing at the valet of the hospital without her but with all her things, was surreal. We were both trying hard not to break down in the middle of everyone, but we did once we got in our car. We had made an appointment to go check out Hillside that day, since the burial had to be on Sunday. In Jewish tradition, bodies are not embalmed so the burial must take place quicker than usual. We went there with my mom and Gila, and we really liked it. It was beautiful there and close by to us, so we decided that's where she would sleep forever.
After that, I remember sleeping most of the day, and one of our best friends, Frankie, came over and cleaned our kitchen while we napped. And he stayed overnight to take care of us.

Sunday we buried her, accompanied by our loved ones and friends. We had a small private viewing before services started so we could see her one last time. I was afraid she would look dead, and that it would scare me but I needed to see her still. She looked like an angel, like she was just sleeping and at any moment, would open her big eyes and smile at me. She was cold. I didn't care, her soft skin was still the same and her chubby cheeks were still squishy so I squeezed them. I still leaned in and gave her kisses and caressed her for as long as I could before they told us the services were starting. Her services were more beautiful than I could have imagined. I had no idea how I was going to speak but I felt her there with me and she gave me courage to come up and say something. I loved what Zev, Frankie and Rabbi Barlev said about her, that she was a bright burst of light, who illuminated thousands of people around the world. It's true, she taught me so much. She changed my life for the better, and I wish she was still here because I miss her so incredibly much, but I also know that she's free now. Free of wires, and tubes, and everything that she had to deal with. It was a lot, I think we tried so hard to give her a "normal" life, that we almost didn't see how hard everything was for all of us. But we still tried, we never gave up on her, we knew she had limited time and wanted to make sure that her quality of life was as great as possible. And she's still with me. I can feel her all the time. Like her essence is still here, and we saw a little floating light on the video of her funeral service. It floated all around us while we spoke, and it could have been some sort of reflection or dust particle, but none that I've ever seen and really, it doesn't matter if it was because for me, I choose to believe its her. It's Leah who wanted to let us know that she will always be with us.

I still break down every time I go into her room, and just randomly when I think about her. I miss her so much it hurts to even cry anymore, but then something calming comes over me and makes me smile instead. We have so many great memories of her, and I'm so glad that Zev was always there with his phone, taking pictures. Even though sometimes he'd drive me crazy, now I'm so grateful to him because we have thousands of photos and videos to look at whenever we miss her. I feel sorry that I'm always the one in the pictures and there aren't as many of him with Leah as there are of me. I took a bunch with him in the few days before her death, but its not the same, I know.

The support we've revived from our friends, and especially my company Riot Games, has been incredible. There are people from Riot bringing us food every day so we don't have to cook ( though it was so much, we had to slow them down to every other day instead), my friend Julie is taking me to the spa on Saturday, and all her nurses from home have been calling us and talking to us or texting us to find out how we're doing. I know that it's been very hard for them too, since they were very attached to her. I think anyone who knew her, was attached to her, but her nurses were one of the team, like us, always there to care for her day to day. We will miss seeing them everyday too.

I'm going to stop here not only because this post has turned into a novel but also because I'm very tired and its kinda late already. I'll probably keep this blog open to write, since its very therapeutic for me, but I hope you will continue to think and pray for Leah, wherever she may be. 
Zev is going to post his thoughts later tonight as well, with more of his pics too.

Love and Peace
Frani

Here are some pics (they are not all in order,sorry):
I made her hair pretty

the first gown i made her, as she lays prone