A little piece of heaven

When we came to Chile, Nathan’s progress with CME seemed great and rapid for the first 3 weeks. Then he got sick, he got grumpy, and his progress slowed considerably. I had a feeling that something was just not right but I couldn’t figure out what was going on. Over the weekend in Buenos Aires, my cousin and I were talking about diet and she mentioned that oatmeal has gluten. VOILA! About 2.5 weeks into our time in Santiago, we were feeding Nathan massive amounts of oatmeal in the morning without realizing it has gluten! We ran out of our normal Bob’s Mill cereal from the US so we bought a Chilean bran of oatmeal and, welll…bad idea.

Yesterday we stopped giving him oatmeal and he had better sessions. This morning he had his best session of the last 3 weeks! He was happy, he worked hard, and he did great in his exercises! It’s amazing how something so minute can have such a massive impact.

I leave you with some videos of this morning’s CME session:

This is the first time in 3 weeks that he was able to do aerial standing. I am so excited to see him doing this again! It signifies progress!

And just a couple of pictures:PS. Ramon has been getting on my case lately to use the proper term for his therapy – CME. Medek was the old term, the new term is CME, so I will be calling it CME from now on.

Gaining acceptance of Nathan’s situation has not been easy. Nathan’s first year, I suffered terribly. I kept thinking of the future, kept wondering what his life would be like given all of his limitations. I wanted nothing more than for Nathan to gain functional skills – nothing else mattered. It felt like a matter of life or death.

Just before Nathan turned 1, I went to see Ven. Geshe Kelsang Gyatso, my teacher, a renown Healer and Buddhist meditator. He was well known in India as a healer and I thought that if Ven. Geshela saw Nathan and laid hands on him, he would miraculously heal his brain and Nathan would become a functional human being. I had waited many months for our appointment and went in to see him with a heart full of hope.

Now let me clarify something. Ven. Geshela only sees people that are gravelly ill, on the brink of death or who have a terrible prognosis. In fact it is EXTREMELY difficult to get an appointment with him. At that time, however, I felt that Nathan’s condition was a matter of life or death, so I was able to get an appointment.

I have to admit that I left the meeting with Ven. Geshela very disappointed. I went in expecting Nathan to walk out and to utter his first words. Instead, Ven. Geshela looked at Nathan and then frowned at me, wondering what that little boy was doing in his office. The first things he said was, “But he is very healthy and very happy!”. He looked at me as if saying, “Why are you here?”. So I told him what I thought was the worst thing in the world that could happen to anyone – “Ven. Geshela, we’ve been told Nathan will never walk or talk.”

Ven. Geshela raised an eyebrow and looked at me with curiosity. “But he’s so healthy and happy! If he walks, if he talks, doesn’t matter, he’s healthy, he’s happy!” “What!!” I thought. “Easy for you to say. You can walk. You can talk. Maybe to you it doesn’t matter. But it does to me!!” He went on to talk to me for a little while. He explained to me that his life is very short, and that what matters is what happens after death. What we do in this life determines the outcome of our eternity. The particulars of this life – whether we walk, talk, are wealthy, poor, successful, etc…at the end, it all boils down to – did we keep a happy mind? did we treat others well? did we engage in positive actions? If we did so, our life was successful, and would have a positive outcome for our after-death eternity!

I was so upset with this appointment. I felt let down. I was angry. I didn’t understand how he could feel that Nathan’s quality of life in this life didn’t matter. Perhaps it didn’t to him, but it sure did to me. Sure, it’s just one short life and maybe all that matters is the future, but I wanted Nathan to have a good, happy, life IN THIS LIFE TOO! How could he have a happy life if he couldn’t walk or talk? How could he stay happy without walking or talking?

It’s taken me more than 2 years to understand and grasp the significance of this advice. And the more I understand it, the more peace I feel regarding Nathan’s situation. If what truly matters is what happens after we die, as it represents eternity, then Nathan is in the best possible place to head straight to Heaven! He doesn’t harm anyone, he is always happy, he loves others unconditionally, he brings only happiness to people. And that matters so much more than how he functions physically.

Now let me introduce Pascal’s Wager. Pascal posited that whether there is a heaven or hell is a 50/50 proposition. Either there is a heaven or there isn’t, and if there is a heaven there must be a hell. He then proposed that if there is a 50/50 chance that there is a heaven, and if there is a heaven we will be there for eternity – wouldn’t it be wiser if we lived our lives according to the belief that there IS a heaven? Because if we’re WRONG and we act badly – stealing, killing, lying, etc – then there’s a 50% chance that we’ll spend eternity in hell. Why not shoot for the belief that there is a heaven just so we have a chance to spend the rest of eternity in a state of peace?

When I think of this wager, and I think of Ven. Geshela’s advice, it helps me to stop worrying about Nathan’s future, and it helps me to accept and rejoice for Nathan’s situation. Regardless of his physical condition – whether he can walk or talk – his state of mind is exquisite. While he maintains this state of mind, all is good! He is on the right path! Of course I don’t know if he will always be healthy and happy. Today I don’t pray for him to walk and talk, today I pray for him to continue being healthy and happy. The rest doesn’t matter too much. We do therapy to help him gain some control over his body, we take him everywhere so he enjoys his life, we nurture his emotional well being. But the priorities are his health and happiness.

It is this thought that has helped me move past grief and the desperate desire to make Nathan function like others in this world. I no longer grieve because I look at Nathan and see that he has SO MUCH. I can walk and I can talk but I wish I had 1/10 of the happiness and love and beautiful spirit that Nathan has. Walking and talking are not the most important things in the world. How we feel and view the world are a LOT more important. And this little boy sure SCORED in that department.

I’ve tried writing this in the most non-denominational way possible. You may have noticed that I avoid talking about God/religion in this blog. I know for a fact I have Christian, Catholic, Buddhist, Mormon, and Hindu readers. I want to respect everyone’s beliefs and talk in generalities where possible. I think it is safe to say that most religions have a concept of a heaven/hell like experience after death. So please understand that I am not preaching or trying to convert anyone – just talking about philosophical principles that have helped me to process my experience with Nathan. It took me a LONG time to understand this and I still struggle with it but I thought I would share what has helped me the most to deal with Nathan’s situation.

I hope this post will bring some help to others.

As we were on our way to the Marriott for Nathan’s therapy (that’s where Ramon has his office), we were told that something was going on causing awful traffic. We continued on our way and a little while later we notice several police cars flying past us heading in the direction of the Marriott. A few minutes later, our cab driver gets a call stating that there had been a bomb at the Marriott minutes before!

Needless to say I asked him to get as far away from the Marriott as possible so we made a random turn and drove away. Later I saw on the news that a bomb had gone off on the first floor of the Marriott – how scary! Only one person was mildly hurt and nobody died. Apparently a police man found the device and was able to take it away towards a non-populated area, and when it went off, only the police man carrying it got hurt.

As you can see, never a dull moment in our lives 🙂 Nathan is safe at his preschool – and THRILLED that he got to skip a session of Medek. I am bummed – this morning he had a great session (videos to come) and I was hoping he’d continue along those lines! Maybe Nathan orchestrated the bomb so he could get out of therapy?? Hmmmmmm.