A little piece of heaven

And here are the last pictures from our trip. I hope from seeing these pictures you can understand more about my recent realizations about my life in Oz.

Close to a year ago I wrote about my Journey to Oz. I thought it was a place that you visited once and you never went back. Journey taken, lesson learned. I thought Oz was a flat road with a destination to be reached. No one told me Oz had many dimensions, like the onion, like the iceberg.

After my last journey to Oz, I thought I’d realized and understood that I can’t fix Nathan and, most importantly, Nathan doesn’t need to be fixed. Yet it was only weeks later that I was off on a plane again, this time to Toronto, shortly after to Chile. This is it, I thought. It wasn’t that Nathan couldn’t be fixed. It was just that I hadn’t found the right tool to unlock the potential in his brain. Try a little harder, sacrifice a little more, you can do this, you can help him, you can change him. What can I say, perseverance is in my blood.

And now we’re back home. I write from my bed in my house in Canyon Country California, with my dog Lucas’ head on my lap and with my boy laughing while he plays with his daddy downstairs. And I’m grateful for this journey I’ve been on. Because once again it has taught me the most important lesson. Nathan is perfect. Nathan does not need to be fixed.

I thought I needed to do whatever I could for Nathan – at all costs. Even if it meant a great personal sacrifice, even if it meant separating him from his father, even if it meant destabilizing our family unit, even if it meant spending every last cent we had and hoping that somehow we could stay afloat. Nothing could stop me from giving Nathan every opportunity possible, not a pregnancy, not distance, not technicalities like figuring life out in a new country.

Today I know – it’s not worth it. I spent 3 months in Chile. Nathan learned to move while on his belly. Nathan learned to prop sit. Nathan learned to sit up for a few minutes with minimal support. Nathan learned to stand and support himself for a few minutes at a time. Nathan was able to stand up and hold himself up in space for a few seconds at a time. Nathan’s head and trunk control improved. He did amazing things I had only dared to dream of.

But today I look reality in the face and say, not with defeat but with strength, at what cost? The cost was just too great for us. The cost of being separated from Owen. The cost of being almost alone in a foreign country. The cost of “hanging” my emotional state on the outcome of Nathan’s therapy appointments. The cost of worrying about the financial burden this was placing on our family. The cost of not having family around watching Belle grow in my belly. The cost of dealing with medical problems without our support team. The cost of facing a lifestyle of instability. The cost of being away from our house, our bed, our dogs, our friends, everything that means HOME.

And the thing is, it all makes less and less sense to me. The more time I spend with Nathan, the more I ask myself – why? Why am I doing all this? Why am I working so hard to change him? Why do I associate his “potential” with developmental gains? Why do I think it’s so very important for Nathan to walk? Why, when he is such a happy human being? When spiritually he is the most advanced and realized and powerful being I have ever encountered? Why do I want to force him to reach his “physical” potential when spiritually, emotionally he is so very incredible? It feels to me like asking Ghandi to become the best football player in the planet – who would even think to ask that of him?

Has she given up, you may be wondering? The answer is NO. I have not given up on Nathan. I am just reprioritizing our life. I realize now that I had my job all wrong. I thought my job was to help Nathan realize his full potential, and I interpreted that as being developmental gains. Now I have changed my job description. My job as Nathan’s mother is to help him stay healthy and happy.

So what are we going to do now? We’re going to settle in at home. We’re going to stop chasing miracle therapies and focus on having a strong, healthy family unit. This means strengthening my relationship with Owen, which has been neglected due to our focus on Nathan’s rehabilitation. We are going to become a healthy, happy family.

We are going to continue with therapies for Nathan – hippotherapy, aquatic therapy, physical therapy, music therapy, speech therapy, developmental therapy. If we had a CME therapist in the West Coast we’d do that. But since the closest CME therapist is in NY we’re going to have to settle for regular physical therapy with a couple of CME intensives a year. But mostly we are going to do whatever is close to home and doesn’t bring chaos into our lives. And the focus will mostly be to keep him healthy and active, to preserve his physical structure, to keep him in good health so he can continue to be his buoyant happy self. I don’t know what this will look like yet. We’ve only been home a couple of days. We’re trying to discover what this new life will look like.

But what I do know is that in this life I will stop focusing so much on his rehabilitation and focus instead on the wonderful gifts he has to offer. I will focus on enjoying him and enjoying life with him. I will focus on having fun and building family routines. I will focus on lapping up the love and beauty that he exudes, and on sharing him with others.

I think this is Belle’s first gift to Nathan. Today I am 24 weeks pregnant. And as Belle grows bigger she has helped me to realize that I have to settle down, accept, and appreciate everything Nathan has to offer not just to me, but to the world.

So we are back from Oz. And we are grateful for the lessons we have learned along the way. And most importantly, we are grateful for the Nathan we have in our lives, that beautiful happy boy with the floppy head, noodly body, that laughing kissing drooling babbling little boy who loves to watch TV, pull my hair, be thrown up in the air by daddy. I love you just the way you are Nathan. I see you now. You are perfect.