A little piece of heaven

Our trip to France started off very rocky. First of all we found out when we got to our hotel on Thursday morning that the airline broke the frame to Nathan’s new wheelchair. It is usable, but completely bent and messed up, and we have to keep pushing left as it wants to keep turning right. I was distraught when I found up. Then we made it to the hotel and none of us could sleep at night. For the first 3 days all of us were sleeping all day and up all night. Then, to top it off, I was so unprepared for this trip that we forgot all sorts of stuff. Most importantly, I forgot to bring a jacket and it’s been COOOOOLD! We also forgot Nathan’s baby carrier and a few other things.

Two days ago I’d had it, we couldn’t get Nathan to sleep and I was out of my mind. I took a shuttle all the way back to the airport to demand that United pay for our wheelchair frame AND send us home early. But after 2 hours getting there, the United counter was closed! I was distressed, but got the message. So back to the hotel I went, empty handed, to find that Nathan and Owen had been cruising around Disney village and the pool and Nathan was very happy and fortunately very TIRED! So Sunday was the first night that Nathan slept at night and things all of a sudden started looking good again. Last night again Nathan slept through the night, and so did Owen and I, so today was a lovely day!

We went to EuroDisney and had a great time! Nathan loved it! As he’s getting older and more mature, he understands the characters more and is more excited about what’s going on around him. He had a BLAST at the Stitch show, I’ll post a video below.

It was a great day and we are now super excited about our time in France! We will be here 3 more days and then we go to Paris!

Check out the Stitch show at EuroDisney..and the laugher you hear in the background is Nathan..he was in stiches!

I’m jet lagged and can’t sleep even though I should go to bed as it’s midnight here. So I’m watching HOUSE to kill time until I get tired. Something he said about a protein made me have an epiphany. Nathan has a mutation in the Zic2 gene. House said that sometimes if genes malfunction it can cause all sorts of problems. I had another source of inspiration and decidedo look in the Human Genome project database and here’s what I found:

Function and Processes of Zic2

So Nathan’s body probably isn’t doing a good job of any of the above. Which brings me to more treatment possibilities! (Of course, with faith as the underlying force).

Just wanted to share this interesting finding.

When I got Nathan’s diagnosis at 36 weeks gestation, all I could do was pray. I prayed and I prayed and I prayed some more…prayer was the only thing that kept me going, the only thing that kept me from being a puddle in a corner. It was the only way I knew to help my unborn baby who had only a 3% chance of survival. I prayed to God, I prayed to Buddha, I asked everyone I knew from all religions to pray. And then the miracle. Not only did Nathan survive his birth, but he was born incredibly healthy for having such a severe brain malformation. He was able to breathe, regulate his temperature, eat, swallow. Everything about those early days was miraculous.

Then somewhere along the way I lost my faith. I allowed fear to take over and I spent many lonely days and nights afraid for Nathan’s future. I feared an early death. I feared that he would be unhappy with his limitations. I feared that he would be in immense pain because of the complications that arise from lack of mobility. And in a heart filled with fear there is no room for faith. I prayed a little bit, but every day that I didn’t see Nathan improve, I lost more and more faith, more and more hope. Until none was left.

Having lost faith all I had left was worldly interventions. So the journey started. I spent hours and hours researching miraculous healing techniques for children like Nathan. We would fly anywhere where there was an assessment that might help, a doctor who might give us an idea of how to fix Nathan. We tried various therapeutic interventions. We ordered all sorts of equipment thinking that maybe equipment would fix him. And 2 years later here we are, not much further ahead than when we started on this road.

So I descended deeper and deeper into a very dark place. And let me tell you that the place where there is no hope or faith is terrible indeed.

Then on labor day this year I hit rock bottom and realized that I literally, physically could not continue on that road. It was only going to lead somewhere very bad. Some laugh when I say I had a nervous breakdown because I wasn’t your typical breakdown patient. But emotionally I broke down and realized I couldn’t continue living the way I was.

Thus began my search for faith. It was faith that transformed what could’ve been the most difficult painful days of my life into a magical journey. I remember feeling strong, peaceful, hopeful during those 4 weeks after the diagnosis, before Nathan’s birth. I decided, it’s time to go back there.

So for the last few weeks I have been on a search for faith. I have been praying to God, to Buddha, to any higher power I know and asking him for help. At first I was afraid to ask for Nathan to be healed. I figured it was ungrateful to ask for Nathan to have better “worldly” skills, that it was un-spiritual. He is the way he is for a reason, God must’ve wanted him this way, what’s the point of him gaining more worldly skills when walking, talking, manipulating objects with our hands has no inherent meaning. But at a Christian retreat that a dear friend took us to, the preacher said something that has really stayed with me. Of course God wants Nathan to be healed. Of course God wants the best for all of us. If someone is sick, God doesn’t want them to remain sick. He wants them to have faith and try to get better. But if there is no chance at all whatsoever for healing, then they should have peace and acceptance of their journey. And it was this teaching that made me realize, of course it’s okay to want Nathan to be better. It’s just the way a mom views the situation for their child. For some time now I have gained and felt acceptance of Nathan’s disability. Of course I love and accept him exactly as he is, but as his mom, I also WANT him to gain more skills, I want him to gain as much function and independence as possible. Which is why we continue trying therapies and doing things to help him. It’s easier now with a mind of acceptance – there are no expectations, and without expectations, there is little suffering if things don’t turn out the way we want them. It’s the same with God. Of course God wants Nathan to be better. And the preacher also said that God has the POWER to make him better. To God Nathan’s disability is like a headache to us. We shouldn’t think that because Nathan is so profoundly disabled, that it’s too much for God to heal. God makes miracles regardless of the severity of the condition.

And I remember the days in which I prayed and prayed, before Nathan was born. Even though he only had a 3% chance of survival, I didn’t believe it. I had FAITH that Nathan would survive his birth. I believed it with every ounce of my being. So I already know that miracles are possible. I already know that with faith and prayer, the most profound disabilities are insignificant and can be healed.

Which brings me to today. We are in search of faith at Disneyland Paris. No, we don’t think that God has manifested through Mickey Mouse here at Disney. We are here to see Venerable Geshe Kelsang Gyatso, a wonderful Buddhist teacher who is known as a healer. I have always loved Venerable Geshe-la’s teachings, he speaks of love, patience, faith. He has been a great guide for me. And he is teaching at the convention center at Disneyland France.

Tonight, during the first teaching, I had to really think, Why am I here? What do I expect to gain from being here, at this teaching? And as I was thinking this, Venerable Geshe-la said, “Without faith, we have nothing.” And I realize I am here more than anything else to find faith. I hope that bringing Nathan all the way to France and having him listen to the teachings will leave a seed somewhere in his heart for love and peace.

I know if I can find faith again, miracles will happen. As I know that it is time to stop thinking that conventional therapies and treatments will be the cause of Nathan’s improvements. 2 years of experience have shown me how far you go with faith in conventional treatments – not far at all. So even though of course we will continue what we’re doing, I am changing my emphasis. I will use those treatments as a way of allowing my faith to heal Nathan. Not what I was doing before, by thinking that it was the treatments without faith that could perform the miracle.

It’s time to try a fresh approach. To let faith perform miracles.

So stay tuned. I will share what I heard during the teachings. And of course I will post gorgeous photos of Nathan at Disney France and in Paris!

Today, I forgot my camera so I was only able to take one photo when we got back to our hotel, but it’s a good one, isn’t it 😉