http://www.nfl.com/videos/nfl-videos/0ap3000000608643
Several weeks ago we had the pleasure of meeting Randy and Jason Sklar and David Nickoll from NFL Network and they were so amazing. So kind, so funny, so gracious and sweet. They spent their day listening to Daniel and seeing what his D[P]R show was all about. We were so impressed with them but in turn they were thoroughly impressed with Daniel. We tried so hard to be patient waiting to see the end result and the wait was well worth it. Check out the finished piece. Daniel is happy and to me that is all that matters.
http://www.nfl.com/videos/nfl-videos/0ap3000000608643
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As much as I can go on and on about my Israel trip and how much more we did and got out of our time together I can’t help but wonder if taking prayers directly to the wall that those prayers were heard.
On Tuesday, while Daniel was comfortably halfway through his D[P]R show I received an email that made my heart stop. The request to find out who Daniel’s Bone Marrow donor was answered. There it was Name, address, phone number, email. All of it. Right there. It wasn’t anything more than ink and scribbles on a faxed and scanned page but all of a sudden it was such a beautiful piece of our puzzle handed to us. I was jumping out of my skin waiting for Daniel’s show to wrap up. I couldn’t hardly listen to the end of it. As soon as it did I was so excited to tell Daniel. I cried and we talked about it all the way home. We had a name now and a place and it seemed so much more real. Immediately I started to think-what now, what next???? I couldn’t wait to think about planning for the introduction. My heart started racing as fast as my mind. After the reality sunk in and I had a few minutes to prorecess the information I had realized that our angel now was a real person. That person had a name and by name alone it was obvious that he was Christian. Knowing that Christmas is coming and that he is our angel it instinctively came to me to go buy an angel to send to him immediately. That is not true my first thought now that I had an address was to buy an airplane ticket and be in New York in 4 hours and on his door step to give him a hug but this was going to have to do as a slightly subtler second approach. After all I didn’t want to scare him off to quickly. Within hours my head was swirling with ideas of words and emotions all over the place. I have been thinking of the right words since we knew we would need a donor. What are the right words to say thank you right? If you have read these blogs you know I have always been thankful and grateful to our angel every day every moment but now… NOW! Now it was time. Time to say those words. I wanted Daniel to have a chance to write or call or email too and he was planning to do this. I was so excited I got to work composing my thoughts and having Daniel do the same. I had chosen the perfect angel and we would send our package tomorrow or maybe email it, I hadn’t yet decided. I was almost too excited to sleep but jet lag was still kicking our butts. The next day we were busy with our day and I was still in haze of happiness with our great news. As I was getting ready to walk out the door to a birthday celebration for great friend (surprise party so it was a timing thing too) my phone rang. The unknown number came from a NY area code and again my heart stopped. Could it be? I was completely caught off guard. I quickly answered and it was him. Our angel. He said “Nadine, This is Pablo, your son’s bone marrow donor.” Oh My G-d, Oh My G-d, my hands were shaking, my voice was trembling. I was so caught off guard. My tears started flowing and I peaked around the corner to tell Daniel, it’s him it’s him!!! I went on and on how I was so excited to hear from him and how I was just getting ready to send him a package and a letter to introduce ourselves and then he told me why he couldn’t wait to call us. I don’t know how the whole thing usually works. After a year through the National Bone Marrow Registry the recipient fills out a form to request that the donor release their information to the recipient. If they do then they can release as much info as they want name, phone number, address, whatever and go from there. They give all the warnings that contact may be made. Publicity may be made blah blah blah. Knowing as much or as little will be pursued. Anyway, as I am explaining that we couldn’t wait to know who our donor was to be able to thank them, he started to explain a little bit about his situation. I couldn’t believe it. As if I didn’t think our story was amazing enough, I hope you are sitting down as you read this. This angel begins to tell me of his own son. At two years old needed a bone marrow transplant. Yep, I am not kidding you. His son had a very rare genetic disorder that effected his platelets and the best treatment was a bone marrow transplant. His donor was from the U.K. but they unfortunately never found out who their donor was. Thank G-d their beautiful son is now healthy and well and they have a daughter and are expecting their third child now, but because they never found out who their life saving angel was Pablo was so happy when we requested to find out who ours was his heart couldn’t wait to for us to contact him he said he had to pick up the phone as soon as he could. I was speechless (which I rarely am). Since I was 1. Caught off guard and 2. In a rush to leave the house for the party I felt I had so much more to say. When I hung up I was regretful how I ended and left the call. When I finished the call Daniel was very angry with me that I didn’t let him talk to his donor. He distinctly yelled at me “Was he your donor?” I left the house feeling terrible about how things went on all fronts. Within an hour had made up with Daniel by apologizing, knowing he was 100% right. He should have had first shot at speaking with his donor and I let him know that. Although Pablo and I spoke as parents of course there is no way I can ever understand Daniel’s perspective and he continues to make me take a step back and reevaluate myself. As well I got a chance to text with Pablo and apologize for rushing and just being grateful for being able to get the opportunity to take my time to introduce myself properly the way I intended and I look forward to beginning our new relationship with each other. This dear man is already so much a part of our lives it will just be a matter of time before we see how we meet one day. He is aware that we may need another transplant (of sorts) at some point and is more than willing to help with that. From everything I know of this lovely man so far he is a saint in my eyes. He and Daniel have already spoken and I hope they will continue to communicate. I have sent him my formal introduction letter and I now feel it will only be a matter of self discipline to not purchase that plane ticket to New York. I feel I need to dedicate an individual post to this day in itself because of what it meant to me. I was up bright and early to meet the group to tour this day. Although I was going to leave Daniel with his class alone , he agreed that I could take advantage of joining this guided tour since I would like to learn more about it and intstead of joining a group of strangers It would be alright to join them if I didn't interfere too much. We began at the City of David that was beyond remarkable. The walking and stairs were extremely difficult for me and I saw how hard they were on Daniel. I refrained from too much interupting but made him take some medication when necessary. I nearly collapsed at one point and holding up the rear of the group was just an excuse at this point. I could not keep p wih the class. I will be honest.We had but on over 10 miles and mostly vertical before noon. The excavation sites were phenomenal and as we crossed the street and saw the new finds just found the old city came closer and closer into our sites. We regrouped and entered the gates of the old city and went directly to the Jewish Quarter. There were several lessons and sites along the way and then we approached the wall. My heart literally skipped and my breath left my body. I am not religious. In fact in these past many months I have questioned my faith and there is not a person in this world that would not understand this. But here now in this place there is not a person alive that can not feel G-d in this place. I mean feel, taste, hear, see, smell, sense with every cell in your body the power of G-d. It makes you cry, it makes you tremble, it makes you stop in the moment. It is said that in this place it is the closest you can physically be to G-d and all I wanted to do was be there and say thank you and present Daniel to G-d and say thank you again and again. And that is exactly what I did. I eventually approached the wall and cried. I cried and I cried. I cried in sadness and I cried in thanks. For those lost and those saved and for those that helped and for those I love. I couldn't be with Daniel at the wall so when I pulled myself together I went to watch him. I wondered what was going through his head and if he had that moment. It was none of my business what his thoughts were. They were his. But then I saw him with his friends and I cried again to see his joy. I cried that he could be there and that we could get him there. I was so emotionally drained but so spiritually full. There was more to the day and more to the trip but to me this was all it was about. This was THE PINNACLE MOMENT we all worked so hard for. The goal. When the kids all gathered again together for pictures they hugged and danced and rejoiced. I don't know if they realized what it meant to me. It was big for each one of them and probably life changing for each one of the kids in a way as it should be but this time for me it will be like no other time. I can't think if this place without crying and I don't know why. It is the most beautiful place in the world for the spirit. I put many notes in the wall with messages directly to G-d. Some for friends lost, some for those in need. Mostly thankful prayers for those who have helped get us there on that day. So many emotions evoked in this ancient place. When it was time to time to head to Jerusalem I was nervous for a few reasons. Was Daniel rested enough for what was coming We had already spent several days with a lot of walking but in betewwn had plenty of time to rest and recover. I knew he would not have is chance when he joined his friends for their rigorous schedule. I had to trust that he had saved up his energy. We headed an hour out of Jerusalem to an archeological dig to meet them. The moment we saw them I knew that this was the reason we were there. He was so glad to be with his friends again. I let him be and was fine that he never looked back at me. I saw he wasn’t happy that I was watching him but it wasn’t in a critical manner, it was only with pure happiness to see him with his group. Once again he did give me the stink eye that he didn’t need or want me there…until of course, there it was again, before long, he needed me to carry his stuff. Of course I had no problem with this. I found my role this day where I became the class photographer and was able to just stand back and not get involved. I listened and got the history lessons of the instructor but hopefully didnot interfere too much. I wanted a million times to talk to Daniel and tell him to drink and ask him if he was okay but I did not. We later went into the city of Jerusalem and to overlook the Old City. Seeing this view was magnificent as the sun was setting but seeing Daniel with his classmates was just as exciting realizing what Daniel accomplished to get there. I wondered if he was internalizing it this way but knew not to ask. From this point the kids were all rushed to the place they would be staying for the next part of the week. This is where I would be leaving Daniel to stay with the group. I did see the lobby but that was it. I had to trust he would make his best judgements. He knows to be careful about his choices because he knows what was at stake. By this time all the group was run down and tired and well into getting sick and honestly so was I. I was now taking cold medicine and thinking how long until it hit Daniel. As the kids were getting checked in that was my cue to leave and as I turned to leave I realized Daniel had left for the night…Nice! But I was not hurt. I was not hurt. I was not hurt. I kept telling myself that. Do you see Daniel in the tan bball cap on the right second row from the back. yep he is blended in and part of his class where he should be.
How can I summarize such a special couple weeks that Daniel and I spent together on our trip together in Israel. Being without a computer to blog daily makes it difficult to give a detailed picture of our time but if I will try to describe the feeling of it the best I can.
Preparing for the trip was ominous and the Doctor’s warnings and my anxiety over Daniel’s health was palpable. I had notes and medications for every incidental possible. I will give you a spoiler alert the only medication needed was by me when I decided to take Daniel’s emergency antibiotics when I started getting sick half way through the trip. Backing up to departure from Denver and Daniel could not wait to cut his ties from me. From the moment of class pictures and parents hugs he had given me the eye and the warning to keep my distance. I new I had to keep reminding myself that this is what it was all about. It was about him and his class and about him being with them. I think I may need to back up a bit for those of you hearing about this trip for the first time. From the first day of Daniel’s diagnosis on June 6th 2014 (it seems like eons ago) and Daniel first became coherent again all he could think of was would he be able to go with his class to Israel for HIP. HIP is the Hebrew Immersion Program where his 10th grade class travels to Israel for 6 weeks to tour and study Hebrew. It is basically the culmination of their entire school career. At this point last June we could not see past the end of the week and survival let alone getting him to Israel but ultimately it became our second biggest goal. One of course was survival. With so many milestones along the way like eating and walking and fighting infections it became the goal of all the Doctors and Nurses the would not even consider thinking of it so soon after transplant. It was not looking very likely to happen but we kept our eye on the prize. And here we were. When we were able to get back to school in August ahead of schedule it was getting closer to becoming a reality and we started making the trip come into focus. Although Daniel’s trip would be modified from the almost 6 week version of the rest of the 10th grade class we were heading for Israel. Daniel’s modified trip had lots of perks the rest of the class’s wasn’t going to have, but the unfortunate non-negotiable downside was that MOM (yah, that would be me) was going as a chaperone. Duh duh duh. Well not really a chaperone, because that would mean I was helping with the class. I was going to be a fly on the wall when he was with his class and strictly instructed to not interfere; help; talk; make eye contact…you get the picture.. I was not to be noticed on HIS TRIP. I totally wanted to respect that and completely intended to abided by his wishes. I was there G-d forbid and just in case. As we were at the send off for the class the day before we left I remembered the same group of kids singing about this exact trip “we’re going on a big trip, We’re going to Israel” 10 years in their future but it meant so much more for us and I was already teary. SO NOW the big day arrives and we are at the airport. All the parents at drop off are getting the same treatment as they are wanting hugs and pictures and I am no exception. Eye rolls and leave me alone is exactly what I got. In fact I think I got it a little more. I got strongly shut down with a back off and this is my trip and you are not part of it. I quietly teared up and although felt completely unappreciated (like most parents of teenagers) I threw on my thick skin and moved on. I stood back and looked at him with his friends and new what an accomplishment this was and that he could do whatever he wanted. Well this independence lasted up until security when he needed me to carry his stuff. Uh huh, I see how this works. It’s okay I was glad to help of course. His class of kids are such a great group and I was more than thrilled to help out. I tried to always stay at the back of the group like a sheepdog to make sure they all were accounted for and only help when asked for something and this seemed to serve well. Once on the plane they were on there own anyway. Daniel asked for an oxy because he was uncomfortable from his Bone Marrow Aspirate the day before and slept a lot of the flight. I was in first class for the first leg and got to sit beside Joe Sakic from the Avalanche and we talked about life with teenagers the whole way and Canada(very funny). When we got to Israel Daniel and I said goodbye to his friends for the week as they went to their school program and Daniel and I traveled to Tel Aviv for a week of rest and relaxation before joining up with them again. Daniel did not join his class at the school because of the conditions there. We did not feel with his new immune system he was ready to handle the desert and situation down there and he was okay with that. After long travels this was how our first dinner went.
The next days we were not on a schedule and it was beautiful. We were just resting and eating and wandering and exploring. We picked up a few tours and found wonderful restaurants and just had no schedule to contend with.
There are hundreds and hundreds of pictures I can't possibly share them all so I I am only showing a few. These are from our few days in Tel Aviv. We toured Old Jaffa we ate at some fancy restaurants, one was a Michelin star restaurant which was the only one in Israel and a very special experience indeed. We went to Ceasarea and the Bahai Gardens and to Rosh Hanikra which is the border of the country. Each spot was more beautiful than the next and the history is astounding.
Our last day in Tel Aviv we had a unique opportunity that I am sure most would never have thought of but through a few connections and old and new friends Daniel and his love of sports transcended borders and followed him to Israel. We got the chance to spend some time with Allon Sinai, the sports editor for the Jerusalem Post. He is THE GUY in sports in Israel and Daniel had a sit down with him at the Olympic Sports Center. We were invited to a private viewing of the Olympic Experience which is kind of a museum of Olympic history broad and specific to Israel in an award winning presentation and it was fantastic and then we were asked to meet and join two current Israeli Olympians and light the Chanukah menorah for a sports broadcast. It was very cool. The young men were extremely polite and handsome. We will definetly be routing for them in Rio in High Jump and WindSurfing. Then we were thrilled to find out we were invited as special guests that evening to sit courtside at the Maccabi Tel Aviv basket ball game. This is the European professional league basketball. Smaller than what we call professional bball but still huge to them and very familiar to Daniel. He was totally pumped. Not only were we treated to courtside seats but Daniel was honored in front of the whole crowd by the all time European high scorer Doron Jamchi. This was a shock and a surprise and although it was in Hebrew I understood that they were honoring my son for recovering from Leukemia. The entire arena of strangers applauded for Daniel and the high scoring player came out after the game to congradulate my boy. This was mind blowing to say the least. |
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