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.


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.


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,