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...

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