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.

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