Tuesday, December 23, 2014

Goodbye 2014

Always thinking of you, Leah

It’s a cloudy day in Malibu. Francesca and I decided to take Roxy out to the beach. Like Frani and I, Roxy enjoys the freedom the beach gives us. Frani will sit there sometimes and meditate or just paint. 
I can sometimes get lost in my thoughts. Frani knows to keep her distance when I’m “somewhere” else. She knows I need my own time…time to think, time to sort and time to heal. At the same time, she knows me so well, and knows that I can sometimes drown in it. For now, my space is respected.

After walking more than a few steps, I find a spot that is near a grouping of giant black rocks. The water slaps around these rocks sometimes getting ahold me; as if to keep me from climbing to it’s peak. I am stubborn. 
I try to climb to the tip. The tallest of this group is around 2 stories high or so. I climb and climb. The rocks are jagged and I can feel them through the soles of my thin sandals. The tip of one of these rocks manages to pierce through. They are sharp,but not sharp enough to cause any harm. In some ways, I welcome the feeling, because for months I have been feeling somewhat numb. 

It’s hard for people to understand how intense the pain of losing a child is. Your life changes.  You see things you never did. Sometimes, these things can cause you more pain. Sometimes, these things make no sense and yet you still try so very hard to understand them. Sometimes, there are no answers.
I have my daughter to thank for giving me the gift of sight . I used to worry a lot. I still worry, but I worry about things that make sense. I’m no longer concerned with the trivial. And since I am ALIVE, and have the capability of making a difference, I most certainly will. This is one of my many promises I have made to Leah and now to all those affected by Mito.

I make it to the top. There I sit cross legged, looking like some long haired guru from the sixties, with the palms of my hands on my knees and my eyes closed, listening to the seagulls fly past me. My intent is authentic and sincere. 
The waves have calmed down and now soothe me, while a gentle salty wind caresses my face. I am comfortably aware.  I can feel my heartbeat slowing down. I am connected.
This is when it happens. A clarity begins to take over me.  A review of the past weeks start to circle in my mind. This is where I “see” things. I see what has worked for me and what hasn’t. This is when I start to map out where the next steps of my personal journey will take me.  
I use this time to forgive myself as well. Why forgive? —because, some of us have a tendency to be extremely hard on ourselves. In the past, my own anger, sadness and/or disappointment have kept me from succeeding. 
Sometimes it can be caused by feelings of guilt. As a parent of a deceased child, it’s normal to keep replaying all the things you thought you could or should have done. It can be torturous, not to mention unhealthy. In the beginning of our loss, I was admittedly a mess. I hid from others, and from myself. I could not connect to anyone, nor did I want to. 
For those of you that have become close to us reading this, I ask for your forgiveness, but I was allowing my sadness to get the best of me. Luckily, most of our friends understood that we could not be there for them or offer any consolation after Leah’s death. It is hard. 
Truthfully, it’s still hard…but, even in all the pain, I manage now, and the pain, turns into strength.  I use to be the type of person that, if someone would step on my toes, I would say “I’m sorry.” NOT ANYMORE.

In my meditation and prayers, I eventually reach a point where  am no longer cemented to those thoughts and they dissipate.  I am temporarily free.

Suddenly, a wet tongue begins to bathe me. So much for slowly coming out of it. It’s Roxy, Leah’s therapy dog. She has found me! Francesca and I have developed a deep connection with her. Dogs can sense things. 
Roxy is so good to us. She brings so much joy into our home.  She is so incredibly aware. I can’t even shed one tear before she starts to jump on my lap to lick them right off! My tears become laughter, thanks to her. Roxy is also another connection I have to Leah and I believe in some way, we are the same to Roxy. 

I turn to my right, and I see Frani painting. That is her therapy. I smile. I smile because I couldn’t ask for a better woman. She was made for me.  Corny, but true. I’m so proud of her and all her accomplishments. I know it’s been so hard for her too. Despite everything; and being a SUPER MOM to Leah, she has stayed incredibly focused in her career going from working at a little cart on 3rd street Promenade ten years ago, to now being a successful art producer at Riot Games. She has also managed to help us produce and write a Documentary with me about Leah’s journey and all of those beautiful people around the world that came to Leah’s aid.  She’s the glue. 

It has been an emotional challenge for us to sort through all of Leah’s pictures and videos. We’ve traveled all over the world, getting interviews from Leah’s supporters thanks to some of Leah’s benefactors that STILL believe in us. We have more interviews to do.

We also felt our amazing private group of supporters known as Leah’s Angels, needed a break too, and that’s what we did. We stayed away from posting on that group. They deserved a break too. Some contacted us wondering if we had given up, but I think they eventually figured out that we weren’t throwing them away…it was our way to give them their space to heal as well. They had fought so valiantly and many if not all in that group, were obviously affected by her passing.

This  documentary has truly affected us in the best of ways. When you hear some of these life changing stories that take place because of the connection that people had to Leah, you realize that Leah’s short life was not in vain. Kids with these diseases cut through to our souls. They awaken us.

I have to say, that out of all the 300 or so TV shows, music videos and documentaries I’ve done as a cinematographer, this is by far the hardest…for obvious reasons.
One of the best things about it too, is working with Francesca on it. 
And guess what? Frani is still as humble and sweet as the first day I met her.

Frani and I have different ways of approaching our loss. But no matter how much pain we feel from our loss, we still find a way of connecting to each other.  That’s the way it is, that is the way it will be, until it’s our turn to leave this world. There is no way to escape it. We try to learn from it and learn more about ourselves through the process.  

For those of you that have felt a painful loss because of this dreadful Mitochondrial disease, know that it is extremely challenging to go on…but, you can do it…WE CAN DO IT!  No one can tell you how; you’ll find that path eventually on your own. Don’t give up on yourselves. Why should you allow this disease to take you too? When the dust settles, know that all of us that have lost our loved ones, will be there for you too, because we are family. It won’t be easy, but we have to keep fighting for those that cannot. I don’t know about you, but I’m never going to stop until we find a cure.

Frani and I also realized that maybe we were trying to do too many things at once and also live our lives.  We had to finally slow down. In the process, we were finding out that we were biting more than we could chew.  We were trying to form Leah’s Angel Foundation, make the documentary, help some local families with MITO, go back to work, and well, find time for ourselves.

Our life with Leah was a constant. People that have Mito kids know exactly what I am talking about. We are always open 24/7.  It never stops, so when our blessings pass away, it’s normal to try and keep going…and going…and going. It’s like being in a race without  a finish line, you just know that you can’t stop. You are tired…very tired. People can tell you to take a break, but you know taking a break is really not possible with a Mito child. Some of us have children that cannot do anything on their own. Some cannot walk, talk, see or hear. But, we as parents know them. We feel their souls. We know they are in there. 
When the doctors tell us the end is near, we turn to our children sometimes and know that maybe it isn’t…because Mito does that too. It plays tricks on us. It can all change in one day…in one second. We kept on going because we’d seen her fight through it all. But, in the end, we found out that she wasn’t the one giving up, and we weren’t giving up, it was her body that couldn’t go any longer. The doctors couldn’t figure it out, we couldn’t figure it out, no one could. It’s a terrible disease. In the end it’s our love for our children that keep us going.

You can feel defeated, but don’t. You did what you had to do. We did what we had to do. Yes, we’ve gotten kicked around, but look at how you have lifted yourself up for them and now you got to do it for YOURSELF.

If all goes accordingly, we hope to have Leah’s Angel Foundation up and running; with training wheels on of course, by May if it gets approved. I know we seem like we’re taking our time, but now you know why.  We have heard from many of you around the globe that want to open chapters and start helping us get the word out and educate people on Mito. Again, we’ll have to go at our pace…remember we’re only two people. We’ve never done this before, but we have a pretty good idea of what kind of programs we need to get started. We’ll be taking baby steps. Again, many thanks to our amazing group of attorneys and those angels that still participate.

We will hopefully have a trailer to view soon. In a perfect world, this documentary will be done towards the end of  2015, but we’re not pushing it. We’ll eventually be having meetings with film distributors and film companies. At this moment in time, we’ve been able to raise enough to get us some equipment, travel and edit what we have. In the future we may just do it all ourselves. For us, it’s not about producing a hit, it’s about educating and getting her story and the story of others with Mito out…AND it’s also about all the wonderful people around the world that have shown us so much Love, Kindness, Compassion, Support and Hope.  

This year, we’ve been invited to spend the Holidays with one of Leah’s prime benefactors, and a member our extended global family out of state. We’re looking forward to seeing them (and Roxy too) and spending time on there wonderful farm and playing with the kids! We can’t wait!

Before I sign off, please consider making a donation to a MITO Foundation like 
MitoAction.org  or the UMDF.org .  There are many Mito families in need.

So that’s the latest report from us.  
Thank you for taking the time

Zev, Frani and Roxy!


  1. I have followed yours, Frannies and Leah's journeys for a long time, all on Facebook. I have heard some that don't particularly care for social media. However, without it I would have never known the pleasure of Leah. I cried both when she was doing better and when she would get worse. The morning I signed on and found out that she had left this world and journeyed to the next I called my husband to let him know. He also followed Leah thru me. I cried for Leah and I cried for you and Frannie. I could see from your posts what fantastic parents you were and how hard you'd fought for her. Even though there haven't been a lot of posts, I've still thought of you all and hoped you were ok. I'm so glad that you are. I just want to say to both of you, you guys were the best parents I've ever seen. Your dedication, stamina and drive to take care of that little angel was just incredible. You've earned your rest now, so I'm glad you're getting it. When you are in meditation or just sitting and thinking, don't be surprised if you hear a little whishing noise. I know it will be Leah there beside you, moving her angel wings to let you know she's ok and also to say, I'm here with you and I love you. God Bless you both.

  2. Much love to you both.You are always in our hearts, and never far from our thoughts.
    -The Mason family, Farmington, Maine.

  3. Thank you Zev for letting us know how you are. We miss you guys so much, and we are hear if you want another email pal! Keep your head up and hearts full and know you are never alone! Todd, Tru and I love you guys! Try to have a wonderful time over the holidays.