Friday, July 26, 2013

Camping trip, pt 2 - by Zev


I turned around and proceeded to walk down the alley that was created by all of Leah’s mourners. A few hundred had made it out, but admittedly, my eyes were fixed on the ground and my mind was speaking to Leah. I promised her that I would never stop talking to her. She was my little confidant and although she never spoke to me the way most people do, I “heard” her.

As we made our way back to the meet and greet area, I was so moved by the kindness and love from those attending. We later headed to the reception. The reception was bittersweet because as the Rabbi pointed out, Leah had a way of making us feel things simultaneously. One could cry and laugh within the same minute. And that, was true of this event. A dear friend of mine, James was taking pictures. He had flown in from North Carolina (thanks to Alana’s kind heart) and wanted to help me document everything as I had started. Truthfully, I struggled with having a camera now on me, but, I think that in the end, it was better because most of us were sad, but Leah was being felt there as well, and most of us were celebrating her courage and short life. Of course there were tears, but they were quickly gone by thoughts of her smiles, and “Isms” (as I call it) and you couldn't help but chuckle. This was so evident with the photos he shot. There was a stupid part of me that was almost upset that everyone was smiling. I know, stupid. But again, Leah did that to people. She brought out the best in everyone.  People came from all over the world. For those that made it out, I can’t thank you enough.

Afterwards, it was not the best of times. This is where the sadness came crashing down on us and the shock of not being able to walk into her room and just hold as we did set in hard. I was hoping it was all a, it was a nightmare. But no matter how many walls or doors I punched, Leah wasn’t coming back. “Leah, what do I do now baby?” I asked. “Where do I go from here without you Princess?” I asked her to please help me.

Frani and I tried to be there for each other. We were never both “down” at the same time. We made a pact that if one of us was down the other would bring them up. And we kept that promise. The mornings (even til today) are the worse for me. My daily routine was getting out of bed and getting a report of Leah’s night and then I’d crawl into bed with Leah for a few before the therapists would make it out.
Towards the end of Leah’s journey we’d get enough courage to take her out for walk more and more often in her little hybrid Wheelchair/Stroller that one of Leah’s angels (Phil) got her. Those walks were magical and I thank Nurse Desi for pushing me and also adding to that courage. (Desi,I miss you my crazy Jamaican nurse!---Your faith in God was contagious too.)  
Yes, it was hard with Leah. I mean, she was the most fragile cases you could find. She could not move on her own. So in a way she was as close to a quadriplegic as one could be. Her sight was not the best either. She needed tubes to feed, and drink towards the end and catheters to  help her pee and such. Like I said, Fragile. And truthfully, we kept a lot of that out of our blog. Not because we were trying to hide anything, but we didn’t want to worry people out there more than we should and we wanted to start concentrating on the positive not the negatives.
Every move out of Leah’s bed and area was a risk. But, that wouldn’t be fair to her to just leave her lying in bed for most of her life. We had to push ourselves aside and go  further and further to as normal a life for her as we could, and if that meant building something specifically for her or rearranging whatever... we would do it. I was always happy to tell Frani when she’d get home about our little adventures outside of Leah’s domain. And I was also happy to see the BIG SMILE on Frani’s face as well.
But now, my own routine was taking away from me as well.  

Frani and I had to get out of town for a few days. Our phones were constantly ringing and emails piled up. We didn’t want to seem as though we were ingrates, but the pain of losing a child was indescribable. Plus, every time we’d speak to someone the floodgates would open and it was hard; VERY VERY HARD to try and heal that way. So getting out of town was probably the best thing we could do. And we were right.

We packed our camping equipment and headed out to Sequoia National Park. The trip took a few hours and it was perfect for us to use that time to help heal a bit and put things in perspective.  Of course, once Leah’s CD’s came on we began to cry our eyes out...but, how could you not? You know how songs trigger memories...and boy do we have a lot of memories. We cried, we laughed, we cried, we laughed and most of all we tried to make sense of things, but that was not easy or possible at that time.

Once we arrived, it was EXACTLY what we needed. I was reminded of the works of Emerson Waldo. If you don’t know who he is, you are missing out.
The air was pure, the trees were abundant and seemingly cradling us in their grandeur. Roxy was running around in circles in total excitement. Frani was a pro at pitching the tent and I took the food and stuff out.  I looked out at the mountains and began to thank God for creating such an amazing place for us. Most of all it was quiet. No phones, no iPads, no appointments just us and the earth around us, reminding us that there was more to life than, that which we only saw with our eyes.

Frani and I walked around just feeling the cool breeze and absorbing the beauty. I always feel at home out here. At times, we took little breaks and during those breaks we’d talk about our plans to further our reach and continue the fight against this ugly disease that is taking so many children's lives. We also, made promises to ourselves. We promised that no matter how dark life was that we would not let it take us over. One of Leah’s names was taken from Frani’s Italian side (her dad’s family, as the other side is Irish). LUCIA means light. Leah was now our “light” and she would guide us as we guided her. We owed it to her to keep that light burning as well.
Frani would sporadically thank me throughout for taking care of Leah when she was at work. I reminded her, that I was not the only one taking care of her. Desi, Luis, Jen, Bianca and Richard were by our side and they truly loved her...and we, them! But, yes, I did appreciate her words and also the fact that I could work from home occasionally, and be there for Leah. I appreciated Frani for her strength and love for Leah and I. I know it was very hard for her to go to work every morning, but as I stated, Frani works for an amazing company that was helping us out and supplying the medical insurance we needed since my Union wasn’t really helping with that, sadly. Frani kicked butt no matter where she was; always making calls for us and also the weekends were ALL her. We compliment each other so well. Thanks babe.
After camping for a few days, it was time for a bath or shower. I was looking like Grizzly Adams and I couldn’t handle my own odor EEECK!. We found an inexpensive little Motel called Gena’s Sierra Inn. It looked like something from a movie. It was a little worn but well kept. As we approached the door, we heard country music blaring out from inside the bar/restaurant. I began to wonder how a long haired Jewish hippie from L.A. would do in this crowd. Frani rang the doorbell and a dark red head popped out from the side building in a sleeping tee letting us know that we didn’t have to ring the doorbell, “That’s just for night time. You can walk in.”

We found our booth inside and a nice woman began to take our order. On the wall to my right were three pictures. All of the people in the pics were in the military. I also noticed a folded flag on the side. I asked about the pics and we were told that these were the adopted children of the owner and that the one on the far right was killed in a hate crime. Of course, my heart went out to the owner since I knew the pain of losing my own. I shared our story with the waitress and within a few minutes the owner came out to greet us and offered her condolences. Before we knew it, we were making an amazing connection with her. I laughed at myself for the thoughts I had and apprehensions about coming here. You see, it doesn’t matter what faith you follow, or what your accent sounds like, or how you look or’s that HUMAN and SPIRITUAL connection you make with people that counts. Before we knew it, she was inviting us to Karaoke night at the bar. “I wanna treat y’all to some moonshine!” she said excitedly. Frani and I looked at each other and read each others minds (why not?) “SURE! We’ve never done moonshine.  “Oh, you are goin’ to love this moonshine!” She boasted.  

Frani and I took our much needed showers and took a nap. After, our naps we got ready and headed next door. The country music was now louder. Now, don’t get me wrong, I might be a rock musician ( I played for many bands professionally in my younger days) but I can appreciate all kinds of music. I kept hearing the same voice singing songs and wondered who had such a great voice? As we walked in I realized that the voice was coming from this one 40 something woman. She was brilliant! Better, than most I’d played with. What the heck was she doing here? She should be out there sharing her gift. I walked up to her and let her know as well. She smiled and patted me on my back. It wasn’t long before Gena the owner of the establishment was prepping up our drinks...MOONSHINE ANYONE?!?!?

The drinks were slammed on the bar. I looked at Frani and she at me, we chuckled and toasted to Leah. All I have to say is...VERY TASTY for the first few seconds (it was strawberry flavored), and then my chest and throat became inflamed like the Space shuttle’s booster thrusters and then BAMMMMMM!!!!!!!!!!!  Wow!  I had my share of drinks in my rock band days and I could handle most drinks, but no one ever prepared me for the KAPOW I felt with this. So, naturally, I had to have another. Yep, this was our  time to unwind. I quickly chased it down with some Smirnoff vodka girlie drinks she offered.  Gena shared some of her own stories with us about her son that was murdered and we shared our stories. We hugged, we laughed, we cried and we connected.

Then it was over to the Karaoke Bar!
Frani LOVES karaoke. She has a beautiful and very girlie-breathy voice. She and I toasted again to Leah with a few more of those Smirnoffs. Later, she sang a few songs to me and melted me to no end. Frani has that gift. She can look at me with those big brown eyes of hers and possess me. The night went on and we made new friends. Gena and her crew made us feel so much like family. We were hugged and made to feel as if we always belonged there...and for that brief moment in time, we believed we did.

Then it was off to our next stop. We decided to head towards Nappa Valley, home to many of the worlds most successful vineyards.  We took a look-see around and then went to go find a spot on this mountain that had a beautiful lake. We were also going to check out the Supermoon! And it was BRILLIANT!

To be Continued...

Sunday, July 14, 2013

Until we meet again Leah - Zev's post

My View

I really don't know where to start. I've been hovering over my computer now for weeks thinking about what I was going to write about in this blog. How I was going to make all this craziness in my head make sense.
Frani has been asking me to write something, but it's been hard trying to sort all these emotions out in my head. What I said at Leah's funeral services was true, I am lost. How does one go back to living a "normal"  life after this?

I was the stay at home parent. I  could work freelance, but Frani had the job with the health insurance, and it was an amazing opportunity for her. I would dare say even a dream job. I was fine with this. Still she managed from her work to make sure I was on top of things. She would always meet me at doctor's appointments, and make needed calls or battle with whomever she  needed to from her desk. On the weekends she would take command and that would manage to give me a bit of a break . There were even weekdays where she would cover for the nurses that would not come in and stay up all night with Leah. I couldn't ask for a more dedicated mother.

But, I was always " on". Nurses got to go back home, Frani worked a hard but fun job; always coming home with a smile on her face, and I... I was always here. There was never a break. I know, it sounds like I am complaining, but I'm not. It's just the way things were. Leah was a very,  very medically fragile baby. More so than most people thought. But all the above being said, I loved it. I loved that I was able to walk into her room at any minute and simply lay next to her. She had the yummiest baby scent. How I  miss that little smell of hers. Admittedly, I keep several of her clothes next to me (unwashed) so that I  can keep smelling her.

My whole day... My whole life revolved around Leah. It wasn't easy. Some days were tougher than others, but I never really complained about it because I knew how blessed I was to have her with me. Frani, tried to give me credit when able, since she began to see that people were not aware of how intense my role was in all of this. I appreciated that, but as many of you can see, I wasn't one to have  pics taken of me ( I regret that), I was the one telling Leah's story through pictures.
I had an amazing team of nurses at my side as well. They taught me so much. I think the last team we had was incredible. In fact, I keep in touch with most of them. We will always be connected through Leah.

Frani's mom became my hero. This was a woman who also had dealt with great loss. You see,  Frani's mom was pregnant with her when  her father died in a freak military accident. Frani's mom was left alone with one toddler and baby to care for. Throughout most of her life she had battled with depression and anxiety. Yet, this woman made the time to relieve me or even substitute for nurses when they wouldn't show. She would get out of work at 11 pm and sometimes cover for us until 6 am! She even went so far as to take nursing classes! Sometimes she would have to battle with the school to allow her to take certain particular classes that were specifically for Registered nurses. She had a hunger to learn as much as she could to help Leah. I salute you grandma!

The house today is full of a dreadful silence. The sound of her vent machine taking her breathes and the tiny beeps made when she swallowed are gone.  No alarms go off. Sad, that I should  miss such things. I  have no calls to make to doctors. Therapists no longer visit. There aren't any deliveries being made  by the pharmacy or oxygen delivered as well. My house was a busy place. Now, I  share my time with Roxy. Roxy was to be Leah's service dog. Roxy is now My service dog.  It's been hard on Roxy too. She wanders in and out of Leah's room, and the other day she walked up to a poster we had made for Leah's funeral and kissed it. She misses Leah too.

The first couple of nights were terrible. I found myself laying in Leah's bed, crying my eyes out. Her bed was just the way we left it from her last outing. I hugged all her pillows and stuffed toys as hard as I  could. But it wasn't enough. It wasn't Leah.
I laid there in the dark, on her bed telling her how much I missed her, but how happy I was that she was finally free. And then I felt something on my chest... It felt the way it did when I use to hold her in my arms and she'd snuggle into me. And, at that point, I realized it was okay to put my sane and logical side away, and enjoy this gift, this alone moment with my daughter. And it was beautiful.
It is hard. Very hard... And painful, but I know that Leah can also be my strength. After all, she taught me so much from seeing her own struggles. At this one moment, I let my rational mind and spiritual mind make peace with each other and for the sake of my own sanity, I will believe that she is in heaven, and that she is running around smiling as she once did and looking after us. I have a guardian angel, and her name is Leah.

I can do anything. That is how I feel now. I have learned so much from that little girl. Things that bothered me, no longer do.I see things differently. My perspective has been altered for the best. It's as if I have been given new sight.

The other day, Frani and I were hanging out in Leah's room trying to organize her medical equipment for pick up the next day. Frani was seemingly staring away in a slight daze. I asked her if she was okay and then she pointed towards the closet where a few of Leah's dresses were hanging. "I never dressed her up in her sleeping beauty dress.", she said. I looked at the dress and said, "Frani, don't feel bad...that really isn't just a dress". Frani looked at me somewhat perplexed. I continued, "that dress is a symbol of a mother's HOPE & OPTIMISM... you believed in her enough to buy her that little dress." After all, Leah had won many battles already.

The last days of Leah's life were almost the same as they usually were at the hospital. In fact, we never felt she wasn't going to make it. It was only a few hours before her passing that the doctor came in to let us know that the latest therapy for her lungs was not working and that we could escalate her to the next phase. Not knowing what this meant we agreed but, we were cut off by Jamie, Leah's nurse and super advocate. She began to explain the painful process that would not change the inevitable.
Weeks before, I had a very painful talk with Frani about my life on my father's ranch. I explained to her that I loved my horses, and the rest of our little animal community. I always butted heads with my dad, but I respected the fact that he cared so much for them. He had even saved an eagle that was injured and took in a wild hog he named cha-cha, because she walked in such a funny way as if she were dancing the cha-cha. I think he cared more for them at times than me, lol.
The point I was trying to make (and struggling to do so with such a lack of eloquence), was that all living things have a right to battle for their own lives when in danger or sickness, but sometimes there comes a point where the suffering is so intense and the outcome was so tragic, that we had to intervene with the hardest of all decisions. And then my body began to shake, and I told her if the day should come where we needed to make a very difficult decision with Leah, that I would never want her to suffer.
Frani and I looked at each other and knew it was THAT time. I'm not sure at what point, but time and space didn't seem to matter. It was as if I were in a dream... or nightmare. I briefly became disconnected in order to make the most difficult decision of my life.
This was our last time to be with our little fighter or as the world knew her as Princess Leah. This was the last time I would feel her little hands in mine, the last I could hold her, sing to her, caress her was the last for all that.
Frani called her relatives and mine to let them know.

Frani's mom arrived and my son Nic (from my first marriage) and I told them that I wanted to give us all a chance to be with Leah alone.
All of us had our time with her. And then I asked them to let me and Frani be with her until the end.
The nurses turned off the sounds and monitors and began to watch them remotely from outside the room so that we could not be bothered while spending our last moments with Leah. I took my cell phone out, and as I  usually did took many photos of her. And then my wife began to talk to Leah and sing to her as she would do during bed time. I switched the cell phone to video and recorded this beautiful and emotional moment. Technology had become my friend and ally in telling the story of this princess, but this time I was selfish and wanted this for myself.

My wife laid on Leah's left and me on her right. Frani had the privilege of feeling Leah's heartbeat. We let her know that one day we would be joining her and that we would always keep talking to her and even sing to her. We promised that we would continue the fight against Mito. I  will keep the next minutes to myself, but know that she gently faded without pain or discomfort. She had fallen asleep, never to wake up again.

Frantically and in tears,  I disconnected all her tubes from her body. No more wires, no more... You are finally free Leah. The pain was so intense. It was a different kind of pain. One that I had never felt before.

I turned to her iPod that was sitting on one of the equipment shelves behind her to pack away. It was one of her favorite things. She loved music. The battery had been discharged and was off charging. I grabbed it and put it on the cot where Frani and I slept next to her hospital bed. All of a sudden it turned on! It was playing an Enya song. Frani and I looked at each other. This thing was off, I know for a fact it was.

Within minutes of her passing, we were met by the social worker who then had to deal with our tears and heartache and ask us questions that unfortunately had to be asked, ( like where she was to be buried and a plethora of other uncomfortable questions) . Thankfully our Rabbi was called and our friend and hospital pastor (the two work together) and they were our rock keeping us up and standing through this next phase. Gila the case manager from the Chai Lifeline foundation was also there;as she usually was. Gila had become family. She always made sure that we were fed and that we were taken care of. She quickly teamed up with the rabbi and I  found out later they managed to get the entire funeral services taken care of.

We had to sign papers and go to Hillside funeral and sign some more papers. The funeral home was so amazing, and treated us so well. Rabbi Bar Lev and Pastor Lori or both went and so did Gila. The funeral home informed us all was taken care of. Apparently, the Jewish community had come to our aid.
We were also told that a group of women had come forth to ceremonially wash the body. It is called the Havre Kadeshe, or burial society. The Rabbi says prayers over the body as they wash it. Leah would be wrapped in white linen. You see in Jewish tradition we don't embalm the bodies. We also bury our loved ones as soon as possible. I am not an orthodox Jew (I have tattoos and wear my hair long, and I don't follow dietary laws... I am rebellious like that) but I have a deep appreciation for tradition and rituals. In fact when my father died of Cancer my brother and I partook in the cleansing of his body because there wasn't a burial society where he lived. I remember the rabbi back then, telling us that doing this good deed or Mitzvah, was the ultimate kind of one, since it is the one that can never be returned.

People that belonged to a special private group started by a wonderful woman in Brazil named Mary, called the Princess Leah's Angels came to our aid as well. Rebeccah offered her house for the reception, Phil made sure we were left alone, and kept the masses informed and drove us to the services. Jennifer and her husband Bruce made our posters with Leah's beautiful face. Bruce and Phil did me the honor of taking her to her burial site as well. Alana  flew in another member James from North Carolina, Anabel made some mini posters, Tracey and her husband flew in from Washington...and the list goes on. This was only a smidgen of one of the finest group of people you can ever meet. I have to thank them all for there support and love. So thank you for being my family.

The services were beautiful. Most of you have seen the video. Did you see that little anomaly flying around some of us? Again, my rational mind and spiritual mind were at war. Being a cinematographer, I thought it was a dust particle stuck on the lens of the camera or a reflection. Well, no one saw a reflection when I was up there. And the camera was checked and there were no dust particles in our around the camera. In fact, the funeral home had never seen this before. Leah, was that you? I'm going to allow myself to say yes.

The hardest part of the services was when they were placing Leah's casket in the grave. It hit me so hard. This was it...I would never see, feel or hear her, ever again. As I ceremonially took the shovel and placed the dirt into her grave I felt excruciating pain and sadness. And then I asked God why? Anger hit me as well and I took that shovel and stabbed the ground so hard I almost broke the handle off. I could barely stand.

to be continued next post...

Only a few hours before Leah's passing. 1:20am  Hope still lingered at this point.

I shot this candid picture of Frani smelling Leah's clothes. It was hard to hold back the tears.

We were still in shock. 

A few of Leah's new dresses. The Sleeping beauty dress, or as I called it "The symbol of Hope a mother had".
Trying to keep our heads in the moment, planning a dreadful day of funeral services for our daughter. Frani always the artist draws Leah.