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.


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


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!