A little piece of heaven

It’s 6 am and I just woke up from a dream. In this dream I saw Nathan running towards me. We got on a horse-drawn wagon and Nathan was so happy to drive it. When we got off the wagon, Nathan was playing in the grass under the bright sun. I was turning the pages of a book draft. And at the end of the book the man and woman couldn’t help but be together, their love was too great. He held her and said, look around. We have everything. What more do we need than the anecdotal blue sky? Nathan laughed in the background.

I’ve been thinking a lot. I’ve been looking back at the last 4 months, and looking at us now, and feeling … extremely grateful.

The Nathan I have in front of me is different from the Nathan that went to Chile four months ago.

– After 2 years of 0 growth, his head circumference increased by 1/2 inch! This is HUGE! He went from the 2nd percentile for head circumference, to the 25th percentile. You know what this means – BRAIN GROWTH!
– He has more overall control of his body. He can make decisions about how he wants to move, and then follow through (within his limitations)
– He can roll from his back to his side, allowing him to play with toys more effectively
– 2 days ago, his teacher at school told me he rolled from back to front
– Yesterday I left him on his back and put a fisher price bus next to him (thanks Julia!) and he was playing with it, rolling it front and back, back and front
– He can support himself in standing , with balance support, for a little while. Yesterday I was supporting him by the lower belly while he stood up and played with a toy hanging from the ceiling.
– I can now leave him on his belly or on his back on the floor and he will entertain himself for a little while.
– He sits better in his car seat and doesn’t flop all over the place.
– A couple of days ago he pulled the glasses off his great grandma’s face and brought them to his mouth.
– He is SO MUCH SMARTER! He is communicating more effectively, making clear choices, responding to questions, and just really showing that his cognition is greatly developed.

There are more little things like this but what I wanted to point out is that these are all NEW things that may sound tiny but they are HUGE for him, and for us. These tiny milinchstones amount to an improved quality of life for Nathan. And for this, I have immense gratitude to Ramon and his CME method.

If Belle weren’t on her way, I would sell my soul and stay in Chile as long as it took to give Nathan as much quality of life as I could. In fact I am planning to take Nathan back to Ramon after Belle is born. I wanted to clarify that my previous post didn’t mean that our time in Chile wasn’t worth it. It was by FAR the most worthwhile thing we have done for Nathan.

It’s just that in the end it came to a situation that I HAD to come home and I, as usual, am trying to understand this and see the best in everything that happens.

As I’ve had more time to think and process, I’ve come to realize that what became really hard for me about being in Chile was not the circumstances, but the expectations. Every day that I took Nathan to his CME therapy I “hung” my state of mind on the outcome of his therapy. If he did well I was happy. If he didnt’ do well I was unhappy. I think this is what made things very stressful for me and in the end caused all the complications.

Looking back I realize that this is what I have been released from – expectations. Somehow, the last 4 months brought me a much deeper understanding and peace about Nathan’s situation, and if he doesn’t improve at all any more, I am deeply grateful for who he is today. Removing these expectations is what is allowing me to feel greater peace and enjoyment of Nathan as my son and my role as a mother.

I still want to give Nathan opportunities. I would LOVE it if Nathan could learn to hold up his head, for example. If he could walk, I will become Mother Teresa and go to India to serve the poor. You know what I mean. I haven’t given up on this wish, nor have I given up on Nathan’s rehabilitation. I have just given up expectations. And I have come to a deeper understanding of what family means, what it means to be human, what it means to cater to everyone’s needs – not just one person’s. I want to continue helping Nathan – but the cost cannot be Belle’s welfare, or my own. That cost is too high and I am not willing to pay it. But if I can help Nathan at a reasonable cost, then I am all for it 🙂

Everyone that sees Nathan today is AMAZED at how well he is doing. His doctor was just shocked at how smart he is, how much he understands, how strong his body is. His wonderful hippotherapy therapist was really impressed at his greater control and stamina. His teacher at the state school can totally see a difference between him today and the child she saw during his one day of school and the IEP and evaluations. And I am so grateful. Ramon Cuevas will be in my gratitude prayers every night for the rest of my life. I hope life allows us to take Nathan back into his capable hands.

In the meantime, I am trying to figure out what we’re going to do now and while we wait for Belle to arrive. The current favorites are: Napa Intensive, 1 hr of ABR every day, 1 hr of CME home program every day, possible Anat Baniel a couple of times a week, hippotherapy, and aquatic therapy. After Belle is born – we’ll see!!!

Oh I’m so glad it’s Friday. Here are some confessions:

* I never make my bed in the mornings (or the afternoon or evening).

* I have my nails done maybe twice a year (on a good year) and I go to the dentist every 5 years it seems (I am terrified of dentists – is there a term for dentist phobia? If there is, that’s what I have).

* I HATE shopping. If you want to punish me for something, force me to go shopping with you. All of my clothes are hand-me-downs from the best store in the world – my mother’s closet. I’d rather run around in rags than force myself to go shopping.

* I sleep with Lucas. No, that’s not another man – it’s my 150 lb great dane. He lays on his side, puts his head on the crook of my arm, and off we go. The last couple of days I’ve slept better than I have in 4 months – oh how I missed you my Lucas!

* I’m a book-a-holic. If you have tried emailing or calling me and can’t get a hold of me – you can guess that I am in the midst of a good book. I can read an entire 300 page book in a day or two – once I start, I can’t stop! And yes, sometimes I will neglect my child and fiancee if I’mi n the middle of a good book. Do they have bookaholics anonymous? I only allow myself to start a book every few weeks cuz once I start I can’t stop and I’m gone from the world!

Okay, your turn. Wanna share?