Sunday, May 10, 2015

Mother's Day

I remember my first ever mother's day as a mom, it was in 2011 and Leah was almost 3 months old. She had just been transferred to the PICU that same day and doctors were still trying the best they could to diagnose her. The whole day had been terrifying, seeing her struggle to breath, the room filling with people in less than a minute, and she was quickly taken to the PICU. We were trying to make sense of everything. What could be happening to her that would cause this?

I remember one of her doctors, pulling us into a room on mother's day and telling me that my daughter may not live beyond her first year. It was as if someone had punched me in the chest and taken all the air out of me. I couldn't breathe, and as the realization started hitting me, I just sat there bawling. All that joy and happiness of having a new born baby seemed so far away and for the first time during that hospital stay I felt like I was losing hope. The entire time we had been there, which by then had been only a week, I had been able to see the light at the end of the tunnel. I thought, it's probably something weird, once they find what it is, she'll be ok and we can go home and live our life normally. But now someone was telling me that no, that wouldn't be the way it would go; that her life would be much shorter and there was a possibility that they may not be able to help her and make her better. Life would NEVER be "normal" for us again.

So much has happened since then, it almost doesn't feel like it happened. I wish I could go back and be in that moment again so I could hold her and kiss her again. But I can't. Life is what it is and Leah taught me that. She was only 2 when she died, but I learned so much from her. I could sit here and cry on my bed all day, missing her and wondering why this happened. I could torture myself and ask why or what I could have done better, differently to keep her alive,  and to most people that would be a completely acceptable way to deal with this pain.

But deep down, I know that I could also go outside, take a walk, enjoy the beautiful day and bask in the sunshine and just feel Leah's presence, and I would feel better. She always did and continues to motivate me. I never wanted let her see me crumble and I never let myself ever get to the point where I was so crushed that I couldn't care for her. She inspired me to be strong, for her and for myself. Even now that she's gone, just looking at her face and remembering how she was, I can't let myself get too low because I know that I still have a mission for her. I still have to tell her story and let people know about this disease because I don't want it to continue killing other children like Leah.

Whenever I wonder why this happened or what my purpose is now that she's gone, and I wonder this a lot (daily), I am reinvigorated by her to keep going. To not wither and just fade because she's gone, but to go out and make a difference for others, to share her story, to make people aware of what they don't know about this disease. Leah was and still is an example of how to enjoy life, even in the most difficult times. She had no idea that life wasn't meant to be that way, she just smiled and loved the people around her, she loved life. And although there are some days that I feel I don't want to live because the pain is too much to handle, I just need to look at her smiling face, and remember all the shit she was going through. And she reminds me to smile, to take a moment to get out of my own thoughts and feelings and just be. Be in the moment, be aware of the beauty around me, see the world through her eyes and enjoy the happiness that life can bring.

She taught me to enjoy life, and it's a very hard thing to do without her in it. But this mother's day, I want to honor her by following her lead, and enjoying the people I love and enjoying life.

Z and I went with my mom to the San Diego Botanical Gardens yesterday for the "Chocolate Festival", since my mom loves chocolate. It was a long drive and we were only there for 3 hours, but it was worth it, because I was with the people I love most, enjoying a beautiful day in nature and eating chocolate. And I know Leah was with us, she was all around us, in everything. There was one moment where I saw a yellow and black striped butterfly, and it reminded me of the butterfly from "Hope for the Flowers" (a book I've written about before). I stood there watching it and it got so close to me, it wasn't afraid of me, it almost seemed like it was going to fly over to me. But it made me think of Leah and maybe it was a sign from her, that she was there, or not. But I will believe that it was Leah and she made me smile.

I wish all mothers a happy day today, and if at the moment you are going through something sad, or you've lost a child, I hope you can find some time to take a moment and, even if it's only through memories, find something to be happy about.

peace,
Frani













Tuesday, May 5, 2015

Leah's Legacy May 5th 2015

Remembering Leah this year on the Anniversary of her Death...

The face that captured the hearts of many around the world.

This time of the year can be a little rough for us.  Mother’s day is around the corner, my birthday, and June 6th is the Anniversary of Leah’s death.
I’m aware it’s hard for Francesca.  She tries to occupy her time, playing video games, exercising, painting….never slowing down.  I know why…for the same reason I do the same, but, in my own way.  As with anything else, your emotions will catch up eventually and demand attention. It feels like a semi has hit you. You crash.  You fall. If you are lucky, you get back up even stronger.

When one of us is feeling the pain of our loss, the other tries really hard to get the other up again.  It’s hard for people that haven’t lost their children to understand that the pain never goes away…ever.  It’s how you deal with it, and if I am bold enough to say, what you do with it too.

My pain is converted to helping others.  I found that when I really get in there, helping others makes me feel amazingly better. I feel it in my heart, my soul, my whole being is bathed in it.
It can even be a little addicting.

Frani and I have been helping others in the area. We do what we can under our circumstances. We’re doing so much better, that we are able now to help a few here and there. I’d love to help more people, but we’re not there yet. As I explained in another post, we can’t do it all by ourselves and we had to decide whether to get the film going or the foundation, and since we were already in the middle of filming we opted to finish the film and then work on the foundation.

We figured the film would make an excellent tool to explain the horrors of having a child with Mitochondrial disease.  But also, to show the love, hope and compassion that many around the world had for her.
We are STILL a Force 4 Leah and others with Mito!


Once I’m done with it, I will be taking a long vacation somewhere before returning to promote the film. Honestly, I want it done already.  
I’ve been going through almost 99 gigs of pictures and videos of our journey with Leah. Then I have to figure out how to make it all make sense, even when the reality of it didn’t at times. It’s challenging.  Sometimes, it feels like I’m pouring acid into my wounds. I sit. I cry. I laugh. But most of all, I wonder.

I don’t blame any god, or luck, or anyone. I don’t feel like I’m being punished or anything like that. The universe is so random, and so infinite that it doesn’t make sense to try and make sense out of it.LOL   It just is.

My life has been a series of ups and downs, and I have survived it all. Thankfully it’s been up for a while. Someday, I’ll write about it.  Right now, I’m way too young to be writing about life, when I haven’t completely lived it out. I’m kinda behind the curve on that one.

I think that is where I am. I’m at that pivotal point of my life where I have to decide at this crossroad where I want or need to be.  Working in Hollywood is a lot of hard work but also fun when you find the right people to be around…positive folk of course. And I am truly blessed when it comes to that.

Sometimes I just want to climb to the top of the Hollywood sign and say “ It’s all bullshit!”  And at the same time, I understand that maybe I can use what I have learned in a positive manner.
Then you run into the “Am I being pretentious?” mentality.  For example, when I write on this blog, I think, “am I being as real as I can be?” Do I sound like a Yoda wannabe? Okay, so maybe I am thinking way too much. ;p

Saying Goodbye. The last time I held Leah in my arms.


I’ve been going to see a therapist.  She’s been good to me. It’s been hard to sort things out in my head, but we’ve managed to figure a few things out.  Right now, my biggest problem is sleep.  It’s hard for me to get sleep.  Part of it is because I have PTSD as well, on top of everything else. For a moment we thought it was sleep apnea. We later found out, I was having nocturnal panic attacks!  Huh?  Okay, it’s bad enough when you are awake, but when I am sleeping I can’t really control it…at least not yet. I have to admit, it makes me very angry sometimes.  I’m looking into hypnotherapy.  I’m thinking maybe I can reprogram my head to project a more positive dream. I am hoping.

There are nights when I can still hear her alarms going off. Frani tells me that sometimes I pop up from bed running to Leah’s room because I have been hearing her alarms in my dreams and I wake up rushing to her room…then, Frani stops me gently and tells me that she’s gone…there are no alarms….no Leah. :(

Taking care of my Angel.

Even after these few years, it STILL feels like yesterday. I can still smell her…funny huh? I think…I can feel her.  When that happens, I feel happy, and lucky that I have that.

I talk to Leah constantly.  I wonder if she can hear me. Sometimes, I wonder if she can see me. Maybe not…who knows…I don’t. Either way, I still do it.
I read a buddhist story. It made me feel better. The story basically explains that— it is, what it is, to YOU!  So, that being said, Leah is alive…in my heart, in my soul, and in my mind. She resides there, embedded to my spirit. Her essence will always be with me no matter what.  It might not be the way I would prefer it to be, but she’s there…she is everywhere. The more I interview people that had their lives changed because of Leah’s story, the more I believe that.  This is the GIFT that Leah has given me.

Sometimes it feels a little surreal when I hear people talking about Leah the way they do. For those lucky enough to have met her in person, they understand what I’m talking about.  
It’s not that I am trying to Deify her…by no means. In fact, I believe these little warriors are reminding us of many things.   
For me, it’s about being happy.  I found being happy can at times be a challenge. When I feel down, I turn and I look at my beautiful wife’s face, and THAT makes me happy too.   I have to include Roxy as well.  She’s licked; I don’t know how many tears, off my face!  

Yes, it’s going to hurt from time-to-time, but luckily I’m not alone. I have Francesca and Roxy by my side and Leah looking out for me too, not to mention a few thousand new family members around the globe that love giving hugs. 
I’d love to hold Leah one last time, but she’s always with me and I do hold her, but in a different way…she lives inside of me, inside Francesca, and inside all of us that fought so hard next to her.  


One of the many articles written about Leah.


So you see, she isn’t gone. I have a feeling that Leah will live for a lot longer than any of us. Our memories of our Princess Leah, will endure.

This June 6th I invite all of you that participated with Prayers, Hopes, Wishes, Dreams, and her Fight, to light a candle in her name and in honor of those that lost their short lives to Mito.    

Thank you Leah for being in our lives...STILL.

Z.

Sunday, April 19, 2015

Star Wars Celebration Anaheim

I was at Star Wars Celebration yesterday, running around trying to get interviews from people in the Star Wars community for our documentary. I have to admit it was a bit of an emotional roller coaster. On one hand I was really excited and looking forward to meeting some of our SW family in person and having a chance to finally say thank you in person. On the other hand, the sadness would creep in and remind why I even met these people and it made me miss Leah so very much, especially because I wanted them to be able to meet Leah someday, and now she's gone. But funny enough, Leah was there with us, putting people right in our paths, it seemed like. I had been trying to find some people and suddenly I would take a breath, look straight ahead and there they were! That happened to me with many people, including Albin Johnson! I thought I wasn't going to be able to meet up with him and then I walk out and see him right in front of me, as if Leah had guided me right to him. :)

It was amazing to hear some of the things that were said in the interviews, it was incredibly difficult not to break down into tears right there, and a few times I almost did, but was able to get through it with lots of hugs. I can't wait to edit some of the footage together and show you guys, it really reinforces our mission with this documentary and why we need to tell her story. So many people in the community were touched and seeing everyone come together was amazing. If we can harness that tremendous charitable energy, we can continue to fight for other children with mito, and perhaps help them have the chance that Leah didn't get, to live a full, happy healthy life.

On a personal note, just hearing the things that were said about us and about Leah, I am continuously amazed and humbled that people see us as such strong individuals. I can't tell you how often I don't feel strong at all, I still struggle to get through some days without the crushing pain of Leah's loss. Some days I wake up and can't find the strength to pull myself up and out of bed, or I go back and forth in my mind of what else I could have done to give Leah a better, longer life.

Hearing these stories yesterday, it renews my strength and I gain more confidence in knowing that this project will be great and that we're doing the right thing, to remember Leah and to hopefully make a difference in other people's lives, in the same way our global family did for us.

I'm thankful for the time I got to spend with those I met and spoke to yesterday. Although I'm sad that I didn't get to see everyone I wanted to, I know we'll have more chances to see them once we get the funding to start traveling again.

With love and peace,

Frani

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

Blessings,
Zev, Frani and Roxy!



















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.

Peace,
Frani

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.






Wednesday, May 28, 2014

Closer


It’s coming closer. The last day I saw my daughter; the last time I felt her heart beating against mine, before it slowed to a stop. Almost a year ago. A year. A year of feeling lost and confused about the direction of my life.  I don’t think people who don’t have children can really understand what I’m talking about.
When you become a parent, it’s a life-altering event. One that makes you realize that this tiny little person is a part of you forever. It’s a piece of you, that you made, a life. A beautiful, curious, joyous life that just wants to be loved by her parents. Your life now revolves around your kid’s life, it becomes your family life. You change your work schedule to spend more time with them. Your weekends are spent more with your new baby than with your friends, and so on. It becomes a part of your new normal. You start to get the hang of it, and even though you go through bumps in the road, you learn to be a mom or a dad, through experience. You expect to have to worry about what they’re eating or if they’re doing well in school.
People never really think what happens if your child dies. When Leah was alive, I sure as hell never tried to think about it. But, it’s so strange, to go from having so much responsibility; so much information to remember about what meds she was taking, how much, at what times, whether she was getting a cold or a bacterial infection, etc. Now, there’s none of that. Our home is so quiet now. It feels like I got demoted. “I’m sorry this position is no longer needed”. I still come home and just feel so lost. I had a routine with Leah. We would give her feeding, her meds, lay with her in her bed, give her a breathing treatment, sing “Dream a little dream” in her ear and caress her soft, beautiful face and hair, until she fell asleep. And even then sometimes, I would still just snuggle with her for hours until I went to bed.
I feel like people around me sometimes are just waiting for me to get over it. They can’t possibly understand that feeling this way isn’t just something you can just get over. She was a part of me, a life that I made and grew inside my body. I felt her before she was born, and when she died it felt as though a huge chunk of me died also. I keep trying get that feeling back. Feeling whole. Even though she was different and had all those medical problems, it never took away the fact that she made me feel complete, happy and loved.
I did yoga outdoors today and it helped me get closer to that feeling. Feeling like a part of everything around me, like one with the universe. Leah was the reason I started meditation. I meditated through the 24 hours of labor, free of drugs and able to let go of the pain. I feel like when I meditate or do yoga, I can let go of some of the pain of losing her. And I feel her instead, and it makes me smile. I remember the little light fluttering around us at her funeral and I know she was there. I know she’s always with me.
I just miss the life we had with her.

Wednesday, April 23, 2014

Finding Strength in an Ocean of Loss


Wed. 4/23/14


I have been so hesitant to write on the blog. Frani is better at it than me. I’m not sure what to say at times, since most of you that read this blog today, have surprised us with your continued support.

In a way, I feel obligated to you for doing so…for being there for us despite the fact that most of you that do read this, don’t really know us other than from this blog. I feel bad. Bad, because I can’t be there for you in some ways. But, I guess in other ways I am there, or rather here, keeping up a fight that is NOT over with. I'm paying it forward. You may call it an obsession.  For me it’s a way to keep Leah’s memory and my promise to her that I made while she was in her last hours. I promised never to give up until we find a cure. I promised to show her fight through my own art endeavors (filmmaking, music, writing, etc)…because, that’s all I know and do.


Princess Leah in one of her happy moments!
My wife and I were talking about Leah (it’s a constant thing) and how much we’ve changed.  Frani and I are different people…I hope better people because of Leah. She really made us more aware of what life is about. But, sometimes, it’s hard to think straight when there is such an imbedded pain resonating throughout your whole body and soul. A pain, that I hope many of you will never deal with ;and to those that are-- or have gone through it, I’m sorry…I know we’ll get through it-- one day at a time.  It doesn’t mean we give up, it just means we are now empowered with a better perception of life and the loss of it. Things have more meaning, life becomes more defined and appreciated.

It’s not about feeling sorry for yourself, or climbing up the tallest mountain and screaming about it. It’s not about blaming others. Or staying angry at those that were not really there when you needed them. I’ve gotten past most of that. It’s about staying on target.  And truthfully, it’s about staying alive through all the immense depression that follows.  It does feel unbelievable to us…STILL.

Almost a  year later, and it feels like she was here yesterday and then gone. There are times when I truly tire from people telling me that it gets better or even to go as far as saying “You should have another baby soon!”---WHAT?!?!  I keep it in, but those are words that make me want to string them up a tree and hang them.

At the same time, we’re learning to mask our sadness and push our smiles. We have to. Frani is better at that than I am. Why bring people down? It’s not their fault. Still, we have to deal with people not really understanding what our life has become after Leah’s passing.  It’s not something you turn off and on, it’s not something that has a timeline or “phase”…it’s pain in it’s purest form.

So, is it something we will be “cured” from?  No. It’s something that you learn to maneuver around, something you can even harness when you are down, to lift you up…YOU have survived this situation. I have. Frani has too.  To borrow from a Christian friend of mine “My friend, you have been doing some serious spiritual benchpressing that goes beyond what most of us have ever gone through., God has an extreme purpose for you. “ 

 But, for all that I have written about Faith, mine is not where it should be. I have faith in what I am trying to do, faith in my wife, in many actually, but whatever “test” I am part of, I don’t think I’m passing it with flying colors.  

I usually celebrate Passover and this year I could barely even recite the prayers. I don’t feel like I’m being heard. Now, before I get a lot of you that are religious sending me advice….be patient, and keep it to yourself. This is a journey that no one can travel with me, but me.

So how are we dealing with her loss? How do we manage?  We have a strong core of friends that have been “babying” us along the way, during our healing process.  Frani and I go to see a therapist, and a psychiatrist, and then we started to go to group counseling. 

Taking a break from all the excitement.
Group counseling was the hardest for me. Imagine a big room, and all around the room sitting in a circle, people begin telling there stories of those children they had lost. It was really hard for me. In the two years and some of Leah’s life, I had become withdrawn and isolated. It was hard for me to connect with people. I was impatient too and the lack of sleep and I.C.U. Psychosis was still dangling from my head. But, I knew that this was important to my wife. And so, I bit it, and went.

What I saw were faces….full of sadness. Sure, a few smiles, but I could tell, they were doing the same thing we do…pretend to be happy. 
We were given name tags and some brochures/pamphlets. I found my chair and Frani sat next to me…close enough to hold my hand.  And then the stories of the children and how they passed began.  I can’t tell you exactly what was going on in my head since I still can’t quite figure it out. But it wasn’t good.

Their stories were touching and very sad. One parent had a tree randomly fall on the car that his son and future daughter–in- aw were in. Just like that, they were gone. Another, had a son that went to help an indigenous tribe in south America maneuver around an oil company trying to buy their land…he was assassinated. Or the mother that saw a car hit her son and then run away, only to be let free by the courts. She buried her son and now she has to deal with the rest of the children that saw this happen as well. By the time they got to me, I could not even make a sound, and Frani jumped in to tell our story. (Thank you Frani)

In some ways, I felt lucky. Lucky, that I had time with Leah.  ALL my time was with Leah. 
One by one, they went around sharing and crying about their kids. It only took a few for my own tears to start to roll down my face…and then I began to shake…I tried to control it, since I didn’t want anyone to feel uncomfortable. I got up and went outside and cried on the footsteps of the temple. And then I let out like I never had.

The truth is most of those that have family may never really “get” what you have gone through. And some can’t be blamed. There lives are somewhere else, and in some ways that is good…for them at least. But you also feel sorry for them. Sorry that they never really got to experience Leah the way some of us did.  We didn’t see Leah as a sick baby. She was so radiant and despite her illness she had something almost magical about her. She fought a good fight for the little tyke she was.

Here's Leah trying on her new glasses and acting silly!
But some don’t get it. This reminds me of a text I got from an uncle who I was wishing  a Happy New Year…he responded “ We made it through another year!”  That comment caught me a little off and I wrote him back “I only wish it was with Leah”  Instead of leaving it like that, he wrote “You know in your heart of hearts it was going to happen”  Can you believe that?  No, the bottom line is I didn’t and no one else did!  There was a possibility, but if you knew the other children that have survived for several years, you would know that.  A Parent NEVER GIVES UP ….EVER!  His insensitivity was shocking.  Maybe one day, I’ll have him volunteer at our new Foundation event, so he can meet those kids that are still fighting so he can see what I already know.

I went back in as  Frani was finishing Leah’s story, the whole room was in tears. They connected with us.  I on the other hand, was in my own world, with questions floating around in my head, and stabbing me in the heart and soul. Is the Universe so random?

There is this joke that goes “ I can’t be an Athiest, because then, who am I going to blame and bitch to when things go wrong?” 

Now before I get a plethora of religious people writing me (and I love you guys too), this is where I am at, at THIS particular juncture in time. It doesn’t mean I believe this or that…I’m just upset.
And it’s not about anyone feeling sorry for us or these kids, it’s about stepping up and NOT feeling this way, by making a difference in the lives of children just like LEAH.  To refresh some of you, about 2 years ago, we were being told that MITO affected 1 in 4000 children. Before then, it was one of those “very rare and extremely hard to find” diseases! And now, we’re finding out through better diagnostics that it’s coming down to 1 in 1000!  This has me worried. Very worried.

It worries me from many perspectives and aside from the obvious, we have to ALL join in to find this cure. Why? Because we are finding new connections to other diseases. It’s not just isolated to this disease we place over a few conditions…it’s scary and we’re going to see a lot more of this disease. More of you will be affected. Mito can affect you in a lighter form or in the awful way it did Leah.  

Don’t get me wrong, it sounds like I’m writing about the end of the world here, but I’m not. What I am saying is, the sooner we get more people to learn about MITO we will see more results on how to combat this illness.  For example, we are in need of Metabolic doctors, and Mito specialists and those doctors that will also offer support to this focus. Every time I’d get a new doctor in Leah’s room or a doctor that was fresh out of med school, I’d give him Leah’s story in hopes of inspiring them to get involved. And you know what? It’s worked. Frani and I have heard from a few students that NOW want to go into MITO research and become specialists in MITO! 

I would love for all of you out there to join us in finding these potential doctors/students.  Learn Leah’s story. Tell them about those that have had it and those that continue to fight for their kids. YOU really can make a difference.  I might sound desperate but the statistics are there.  Help me educate the masses…so that all of those children, teens and adults, will not have lived their lives in vain. Have it count.
And for those that are trying to help, I thank you. Let us dust off the dirt from this fight, and stand up and be counted.
Your rewards will be felt through your hearts.

~Zev

COMING SOON:
Iknowmito.org   ß-This will be our new web address.

NEXT BLOG:

More on the new name, and what we are going to be doing on our next blog post.
Also, we're going to share a few things from our travels including our recent trip to KANSAS CITY!