I am laying down, curled up into a ball. The lights are off in the bedroom, but there is some light that pierces through the blinds of Leah’s room that somehow bounces off the walls and creates this little halo over a poster of Leah, that my friends Jen and Bruce (love you guys) had made, for her funeral. In the middle of the poster Leah is smiling at her mommy. I stare and I stare at that poster, hoping to feel those moments I had spent with her. How I miss her smiles. As time went on, smiling became more of a challenge for her, but she somehow found the energy to do it. It was even like that, a few hours before she died. She managed one last smile. As I normally do, I took a picture of her. I love telling stories with pictures and capturing the moment. I have over 80 gigs of pictures I took of Leah in the 2 and some years she was alive.
Beside the poster, is a little pink penguin I bought for Leah on her first visit to the ICU. It has these big eyes like Leah had before most of her sight was taken from her. It has these adorable puckered lips just like Leah inherited from me (probably the only thing she got from me…lol). On top of its head is one of a few tiara’s that Leah was given, by one her global family members. I know it sounds weird, but sometimes I talk to this little penguin. I talked a lot to Leah. She was my little therapist. There were times that I would panic when the nurses would be late to work. I prayed hard, that nothing would happen to her while I was alone. People had no idea how fragile she was her last few months. I knew I could now handle anything with her, but it was still scary. But, at the same time, I really enjoyed the alone time I had with her. I would cradle her in my arms and we’d just chat. I’d tell her about my hopes and dreams for her, and for us as a family. I would tell her how proud I was of her mommy, who despite all the challenges we faced, she never faltered once. I know most of her strength came from my wife.
So here I am, on her bed alone asking all these questions…
Why do these things happen? What is the meaning of such suffering? Why my beautiful and innocent daughter? Where is G-d? What did she do to deserve this? And many, many other questions.
I tire of people telling me things like “She’s in a better place.” Or “G-d needed her.” Or “You should read this book. I don’t want to hear any of that. I want hard answers!!
And then, something clicked. I got up from her bed and wrote on my tablet…
“MAYBE LIFE ISN'T JUST ABOUT HOW YOU LIVE. BUT, HOW YOU LIVE, WHO YOU TOUCH, AND WHAT YOU LEAVE BEHIND ON THIS WORLD; FOR FUTURE GENERATIONS, THAT MAKE LIVING WORTH IT.”
And a peace came over me. Once again, I felt her little spirit embrace me. “Oh Leah, now you are taking care of me!” “I’ll be okay baby…I’ll be okay, don’t worry about me. It’s hard without you, but you have given me the strength and courage through your own life to keep me going.” And that night, she saved me.
A TIME TO HEAL
It was time; time to make some phone calls to my doctor about finding a therapist, to help us through the grieving process. And so we did. Frani was dealing with things her way, and I was in my own way. Finally after almost half a year of keeping ourselves busy with work and other projects it was time to face our emotions and the reality of our loss. Yes, it was good that we were helping other people in the MITO community, but, we had to be a little selfish and deal with this on our own terms.
I decided to post the above because I know there are other families that are dealing with their own loss(es). And you ARE NOT ALONE… it’s terrible what has happened to us, but our children have made us stronger and I hope that, that strength will carry you through this time of healing.
As I mentioned we had to take some time for our selves. Unfortunately, we had to take a break from a few people, that although we loved them and they meant well, they were also hurting and wanted shoulder to cry on, in a time when we could not give them that. It’s hard to get up when you are being pulled down. We had to suggest they find help as well, while we dealt with our loss privately. I hope they understood.
Despite this long break, we think of those of you that stuck through thick and thin a lot, and YOU ALL are part of the inspiration that got us working on the Documentary about Leah and her global support! Still it’s been so hard looking through all those pictures and videos of our little princess.
I hope your holiday season was a good one. As you can probably imagine, it was a tough one for us, but we are lucky to have such amazing people in our lives that have cradled us along the way. You know who you are. And of course, all of you that have followed us on social media and unbelievably STILL do. Thanks to those people that sent us some very lovely Christmas and Chanukah cards too! Your love and cards brought a smile to our faces. You made more of an effort than some of our own family.
…AND FROM THE ASHES
I feel guilty. Why? Because, our lives (from a professional perspective) have blossomed since Leah’s death.
Frani has been promoted (again). She went from being an assistant to finally becoming a producer at her Video game company! I feel blessed that she has such an amazing job AND that all her workmates are such great people! It’s a rarity to have all that in a job. It has obviously helped us out economically and put us in a place where we can breath a little. I’m also very proud that despite her schedule, she has managed to find the time to help put our foundation together and volunteer. At the risk of sounding mushy, she is one of the most beautiful people (inside and out) you will meet. She’s also been helping manage my career as well. She’s earning her 10%!
I have been very lucky too. Only a few weeks after Leah’s passing, I was already working on the set of a TV show! I want to share more on this but I can’t until the air shows. HINT: It has to do with one of my favorite films.
I found out that one of my shows has a spin off and I am a Director of Photography on that one. It’s called “ANGEL FROM HELL: The Bill Perkins Story”. It’s currently in post-production being edited.
On top of that, I’ve done a few voice-overs and I’m writing music for video games and shows.
And Frani and I have been playing in our band. No name as of yet.
I got Frani a bass guitar and Rocksmith (a video game that actually teaches you how to play guitar)for Chanukah. She LOVES IT! She’s a natural!
Writing music has been really good therapy for both of us. Our friend (and my childhood friend) and Leah’s Godfather, Frankie is our co-writer and drummer. Frankie and I have been in bands playing professionally together for years.
Leah has inspired many songs. We hope to release our EP to the masses within the next 6 months or so. The label will be taking a portion out of the proceeds to go to MITO research!
Still, I would trade it all to be with Leah again.
See Leah, it’s hard, but we’re trying.
THE PRINCESS LEAH FOUNDATION
Other stuff to report…
Many of you have been asking how you can get involved in helping us out with our Foundation.
We can’t tell you how excited we are to have such enthusiasm! Basically, we are still in the process of becoming a non-profit. We have been told by legal counsel that we can claim tax free donations that occur within a 16 month time before they actually give us non-profit status. However, we don’t feel comfortable at this point taking any donations for The Princess Leah Foundation yet. So, what we are doing is sending them to Mito.Org and The United Mitochondrial Foundation for now, until we get that taken care of. We figure, it’s the same War we are all fighting anyway.
So this is what we are and plan to be…
We are a grass roots and completely volunteer organization that began as a support group for us (the parents) and expanded to eventually help others that were experiencing the same issues.
We provide education to the masses through the Arts and Entertainment arenas.
We come from all over the globe, walks of life, all economic and religious backgrounds.
We plan on starting a Volunteer registry. This way we can keep in contact with those people that would want to volunteer AND provides us with a data base that people can check on to see if the volunteer is legitimately working with us. We are doing this to avoid having people claim they are part of our organization when they are not, for training and for safety and privacy issues as well.
Although, we cannot be all things to all people we hope to give them tools “Capsules” that families need to EMPOWER themselves throughout the difficult journey of dealing with Mito disease.
We hope to help those that are in need, and if we are not able to, we hope to point them in the right direction.
Some of the tools we want to provide would entail things like teaching parents how to maneuver around the healthcare system efficiently, how to budget themselves through difficult times, finding the help they need for their child, by contacting our connections in the Mito community in hopes of getting better results, how to ask the right questions from doctors, social media do’s and dont’s, sharing your story with the world…to name a few.
We are currently working on the following projects.
We are positioning ourselves for the
"I KNOW MITO"
campaign that will coincide with Leah’s birthday on the 17th of February. This campaign (we hope) will hit worldwide in an effort to eradicate misinformation and educate the masses on Mitochondrial Disease.
The more people know about it, the closer we’ll get to a cure!
We are also trying to get our MITO Camp for kids and their families going too. Although, we want to figure out a few more legal and medical issues that might present themselves out before doing this. We have an amazing benefactor who wants to donate a place for this to happen AND we also have been talking to the Junior Blind Foundation who would like to help us out with our Camp here in Malibu.
Frani and I are working on a few projects ourselves like writing a children’s book about the day in the life of Leah, in an effort to educate.
ROXY ROO!!!!! The Mito defending dog! She’s also The Foundation Mascot! And we are training her to be able to visit kids in the hospital!
We want to visit schools to educate kids and their teachers.
We are doing our “Gowns for Good”. We are making hospital gowns cool! Now, kids will have some pretty awesome gowns for them to wear at the hospitals. We have Princess designs, Super Heroes, and so on that are cut in the needed areas for Tracheas, feeding pumps, and lines. They are easy to take off or put on too…not to mention, nice and soft instead of those ugly uncomfortable ones they usually provide.
We have already helped produce several auctions, and gallery events that have provided help and more than a few thousand dollars to several families in the area and Mito organizations with the help of our Leah’s Volunteer/ANGELS Group and businesses that have joined the cause.
Obviously, none of this will be happening all at the same time. We’ll be rolling these things out slowly but surely. We’ll be testing things out with some of our local MITO families to see what works best for them and what doesn’t.
In the next few weeks and months we’ll be posting more about our events and how you can join our PLF Volunteer/Angel program. We already have many people positioned to help out in other states and countries. These “Volunteer Leaders” will help guide you through these events. At the moment we have Volunteers positioned in Kansas, Florida, Texas, California, North Carolina, Georgia, and we’re hoping to have it spread to other states. Internationally, we have volunteers in Spain, England, Brazil, the Netherlands, Germany, Peru and more.
We are also being invited by Conventions to speak about Leah, and Mito. We're excited to chat about this.
But the truth is you really don’t need us to get involved. Look around your neighborhood, you might find a child and/or family in need. Sometimes, it’s more about a hug and a smile than anything else.
Please continue to check up on this blog for more updates.
Our Foundation page should be up in time for Leah’s birthday! At that time we’ll be moving all event notices on that site and keeping this site as just a blog.
We thank you for all the love and support you have given us and welcome you to our PLF family as well!
Upcoming Events Schedule:
FEB 17th 2014
*Marker unveiling at Leah’s grave sight
(Tentatively set due to manufacturer of marker.)
Either way, we'll be there honoring Leah on her Birthday.
@ Hillside Memorial Park, Los Angeles, CA
*Planting of Giant Sequoia tree in Leah’s honor
@ Junior Blind of America
*There is also a Run/Marathon happening on that same day (not PLF sponsored) for MITO! We’ll have more info on that later. @ Los Angeles, CA
*Frani and I will be attending a MITO conference and will be doing more interviews with Mito researchers from around the world.
@Los Angeles, CA
* The Princess Leah Foundation website goes live! And we go live with our Twitter (for live updates) and other social media sites!