Part 3.1 Last Picture (see Part 3 below)

This is our last picture of Nechama. It was right before she went off to Camp (see Part 3 below):

Part 3: Days before camp

Our initial departure to camp was delayed for 2 days. Doctor's orders. In the meantime, I had taught my new trick to Nechama. We went to the drug store , bought an ace bandage, tied it to her leg and went home. When we walked in, Saguite didn't notice anything different. She knew something was up because Nechama and I were hysterical laughing. Finally Nechama starting waving her hands in the air. Saguite freaked and we all burst out laughing. Boy, that was a laugh to remember. Since My brother in-law Yaniv from Florida was supposed to be in New York on the same day that we were going to camp (Now Tuesday) with his then girlfriend, now wife. They desperately wanted for Natalie to meet Nechama before she went to camp and that was the consolation prize for going to camp late. I went to work while Natalie and Yaniv took pictures and videos of Nechama and the kids. A close friend of the family described Nechama, in her blue outfit on that day, as regal. Natalie and Nechama hit it off right away and Nechama gave her approval. This was something that Yaniv said sealed the decision for him to marry Natalie less then a year later. The problem was that now a new problem developed and we needed to bring Nechama to the doctor to check her out suspecting a possible infection. We picked up Ilana (Nechama’s best friend and Big Sister from Chai lifeline) headed to Columbia Presbyterian for a quick test and then off to camp. We arrived at Columbia, took a few tests but there was still one test left and the nurse did not have it. She said "oh just run down to the ER”, (since she needed to leave for the day) and “they will do it for you”. Somehow we were admitted by mistake and we were stuck in the ER for almost 2 hours. We were all a bit frustrated. Well we finally made it out of there and off to camp. When we got there we played the same trick on the camp nurse, Miriam G. Nechama wrapped the pump with an ace bandage around her leg. This time Miriam noticed right away and started to freak. What a great time we had! It was my "custom" to spend the first few nights of camp nearby in case of emergency. I dropped off Nechama and Ilana and headed for a nearby hotel room for the night. As I pulled away from the camp, I looked in my rearview mirror at Ilana and Nechama. They were giggling and smiling and I thought to myself, “Was there ever a happier moment in her life?”

Part 2 Plane Ride Home

I was careful to be on time for my flight home since I knew I would be taking Nechama straight to camp as soon as I arrived. Somehow I had dropped my cell phone so I was feeling a bit naked. I, for one, loathe flying. With that in mind, as soon as I boarded the plane, I quickly administered myself some "drug induced assistance" so that I could sleep on the plane. In a moment…. lights out. Before I knew it, we had taken off, flown to NY and landed. It was perfect, except I was still feeling groggy. It was just as well, the real surprise was on me. As I departed the aircraft, I slowly came to realize that in reality, we had never left Miami. Apparently there was a problem with the plane and all passengers were required to find another flight. Panic set it. I was NOT going to be the CAUSE of Nechama being late for camp. I was somewhat on the warpath. I can't say that I was a banner for Klal Yisroel as I ran from counter to counter to get me on a flight to New York. After an endless battle with Airline staff, I found a payphone and called home. To my surprise and disappointment, Saguite told me not to rush.!? My mind was racing at a 1000 thoughts per second and the only thing that could come out of my mouth was "but what about camp?" Nechama had an "episode" at home. She would not have to be hospitalized but she would have to stay at home for 2 days. Considering how much Nechama looked forward to camp, I was in a state of shock. How could this happen? Well, that taught me a lesson about who was in charge. Sometime that night, on some ariline, I took whatever flight I could get. Luckily, when I awoke this time, I was in New York.

Part 1 The Conference

In June of 2004, Pulmonary Hypertension Association held their biennial conference in Miami Florida. I made arrangments to attend along with my brother-in-law. We would spend Shabbos in a nearby hotel and walk to the conference. We hoped to find some bit of life saving information.
My flight back to New York was to leave on Sunday morning at 10am. As soon as I arrived back home , I was supposed to take Nechama to Camp Simcha (see previous post). The conference was interesting and there was a wide range of people there. We saw saw other children with the same illness as well as adults. Nechama's medicine was delivered 24 hours a day via a CADD Pump which provided life sustaining medication thru a permanent introvenous line. The pump is about the size of a walkie talkie but quite a burden for Nechama's frail body. We learned a neat trick on how to conceal the pump by wrapping it with an ace bandage around your leg covered by her skirt. I was eager to teach her this new trick which we used only 2x but the conference was worth it for that alone. There were some new medicines and some new methods of administering the medicines but no magic bullet. We were already on the cutting edge. This was the first time that my brother in-law saw,upfront, how serious the disease was.
There was even a couple who had lost a child to pulmonary hypertension who came to the conference. Somehow it was a comfort. It linked them to the past....to a time when their child was alive.

June 2004

Recently, I discovered another one of Nechama's journals. In it is a calendar that she made for last June. She was counting the days to camp. In the near future, I will be posting a number of blog entries describing the events that led up to Nechama's final hospitilization
The story says a lot about who Nechama was. Stay Tuned.

Shavuos

With Shavuos rapidly approaching, it is incumbent on me to contrast this with my Pesach expecations. This is the first Shavuos without Nechama A"H. By definition, it is much less of a family holiday than Pesach. For those who stay up all night, the first night is somewhat rushed in order to get out to learning. The first day meal,awkward, at best, at 2pm is not your average seuda. The rest of Yom Tov is trying to get back onto a normal schedule. In addition, getting through Pesach has taught me that just about anything is possible. "Gam Ze Yavor" means this too will pass. Nechama used to used that expression often. it was one of her "words of advice" for Rabbi Stein in her famous letter. Wishing you all a pleasant Yom Tov!

Pain

It is natural for a bereaved parents to find it difficult to be sympathetic to overly dramatic people. You would be amazed at the comments that we get. I remember talking to a friend once about Nechama A"H after she passed away. There was a pause in the conversation and I guess he wanted to try and relate. He said, " My car was stolen recently. I am really bent out of shape about it." There are many reactions that one could have at that point and a lot depends on the person on the receiving end. For me, pain is pain. Certainly the pain of someone who stubs his toe is not commensurate with the pain of someone who gets into a skiing accident. However, it still hurts.
Having gone through, possibly, the worst tragedy one could experience, it gives me a new perspective. I can sympathize with anyone who is troubled, even by seemingly insignificant issues because pain is pain. On the other hand, I can put it into perspective, at least for myself. A stubbed toe hurts, but the pain will go away. It also validates another feeling that I have. I truly believe that only a bereaved parent can understand the true pain of someone who has lost a child. People try to understand but really they can't. It is common for visitors at a Shiva house of a deceased child to attempt to relate by relaying a story about their 85 yr old parent who passed away. People in general, are good and in their genuine goodness are trying to relate. We shouldn't penalize or judge them. People can also be insensitive and self-serving. By thinking about the person whom you are talking to, you can minimize the pain. Another interesting fact is that the pain of missing your deceased child, the pain of loss never goes away. I don't even think it decreases in intensity but it does decrease in frequency. Life everything else, it has its ups and down periods. May G-d grant us the strength help ourselves and to help others.

Positive Outlook on Life

I did not write this but thought that it was worth printing:

Michael is the kind of guy you love to hate. He is always in a good mood and
always has something positive to say. When someone would ask him how he was
doing, he would reply, "If I were any better, I would be twins!"

He was a natural motivator.

If an employee was having a bad day, Michael was there telling the employee
how to look on the positive side of the situation.

Seeing this style really made me curious, so one day I went up to Michael
and asked him, "I don't get it!

You can't be a positive person all of the time. How do you do it?"

Michael replied, "Each morning I wake up and say to myself, you have two
choices today. You can choose to be in a good mood or ... you can choose to
be in a bad mood.

I choose to be in a good mood."

Each time something bad happens, I can choose to be a victim or...I can
choose to learn from it. I choose to learn from it.

Every time someone comes to me complaining, I can choose to accept their
complaining or... I can point out the positive side of life. I choose the
positive side of life.

"Yeah, right, it's not that easy," I protested.

"Yes, it is," Michael said. "Life is all about choices. When you cut away
all the junk, every situation is a choice. You choose how you react to
situations. You choose how people affect your mood.

You choose to be in a good mood or bad mood. The bottom line: It's your
choice how you live your life."

I reflected on what Michael said. Soon hereafter, I left the Tower Industry
to start my own business. We lost touch, but I often thought about him when
I made a choice about life instead of reacting to it.

Several years later, I heard that Michael was involved in a serious
accident, falling some 60 feet from a communications tower.

After 18 hours of surgery and weeks of intensive care, Michael was released
from the hospital with rods placed in his back.

I saw Michael about six months after the accident.

When I asked him how he was, he replied, "If I were any better, I'd be twins
Wanna see my scars?"

I declined to see his wounds, but I did ask him what had gone through his
mind as the accident took place.

"The first thing that went through my mind was the well-being of my
soon-to-be born daughter," Michael replied. "Then, as I lay on the ground, I
remembered that I had two choices: I could choose to live or...I could
choose to die. I chose to live."

"Weren't you scared? Did you lose consciousness?" I asked.

Michael continued, "..the paramedics were great.

They kept telling me I was going to be fine.But when they wheeled me into
the ER and I saw the expressions on the faces of the doctors and nurses, I
got really scared. In their eyes, I read 'he's a dead man'. I knew I needed
to take action."

"What did you do?" I asked.

"Well, there was a big burly nurse shouting questions at me," said Michael.
"She asked if I was allergic to anything. 'Yes, I replied.'
The doctors and nurses stopped working as they waited for my reply. I took a
deep breath and yelled, 'Gravity'."

Over their laughter, I told them, "I am choosing to live. Operate on me as
if I am alive, not dead."

Michael lived, thanks to the skill of his doctors, but also because of his
amazing attitude... I learned from him that every day we have the choice to
live fully.

Attitude, after all, is everything.

Therefore do not worry about tomorrow, for tomorrow will worry about itself.
Each day has enough trouble of its own.After all today is the tomorrow you
worried about yesterday.

Hatzalah

Recently, the hatzalah BBQ in our community was hosted at the Sands catering Hall in Long Beach. The dinner\BBQ was the epitome of Dinner Fund raisers. The food was in abundance. the speeches were short. They gave out awards to a select few. Each award took approx 1-2 minutes each. The message of the speeches were clear : "We save lives. We are volunteers. Our budget is audited by an independent acccountant and published for all to see. Please help us continue our work in case you need us." Hatzalah is an incredible organization. Each year, I feel compelled to run to the podium,grab the microphone and speak about what an incredible organization this is. I remember back to the day of last year's BBQ. It was about an hour until the BBQ started and the house was calm. All of a sudden , Nechama had a bad episode. Some of the Hatzalah members came from the BBQ , where they had been setting up. I guess that was the beginning of the end. We spent a few days in the hospital and were released to go home. A little over a month later, we went back after another episode. We spent over 5 weeks in the hospital and came home without Nechama. It is strange that more people don't give to hatzalah. When a crisis or trumatic experience (medical one) happens, you would give every penny in your posession to be able to call on Hatzalah. Knowing that Hatzalaha exists, brings a sense of security that you can't imagine. They must have come on dozens of calls for us over the last few years. Hatzalah members were awed by Nechama .Her smile....her sense of calm, no matter what was happening. Someone told us that they started to say tehillim for Nechama every day during her final hospital stay last summer and he has continued ever since. He said, they have seen all types of people in all types of situations but they never saw someone like Nechama. She was the calmest one of all of us.
Remember.please give to Hatzalah so, because their very existence is a tremendous source of comfort and security even if , g-d willing, we should never need them. And even more so even we ever do need them.