To Oz and Back Again

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.

Comments

  1. http://Mary says

    wow!…. que bien marcela!

  2. Wow, tremenda sorpresa oir esto. Primero, me apena, pensé que te vería a la vuelta de Colombia, que te vería con tu ‘guata’ de embarazada y además todavía tengo algunas cosas que devolverte!
    Pero lo más importante es que me alegra mucho leer esto. Espero que dure mucho!!!1 Bien por Belle!!!
    (A ver si me dices cómo comunicarme ahora con Denisse!!!)

  3. http://Andrea says

    You brought a tear to my eye!!! This is what I have been trying to tell you, you just had to realize it for yourself. I’m very happy to hear that you are going to slow down a bit and just enjoy the ride, enjoy your son, enjoy your family and Belle. I think once she is born, she will give Nathan more motivation then you could possiably imagine. Keep doing what your doing and thats loving your family like crazy!!

  4. Mary- Thanks!!!

    Sonia – Todo fue super repentino! Ahorita te mando un email y te cuento!

    Andrea – I know I know…I’m just a lot more stubborn than most 🙂 I had to go to the ends of earth to verify that it really is round 🙂 I am happy about this new phase we are entering !

  5. Powerful post Marcela & so well spoken.
    I should re- read this post often for my own benefit:)

  6. http://Laura says

    Welcome home amiga! This was a beautiful post. I am happy you have found a new peace. Call me when you have some time.
    luv u guys

  7. Hello Dear Marcela,

    I am happy you are enjoying your home. I am in canada right now and I am also very happy to be at my own home.

    I will not say that you did give up. You are right in every word you are saying. Maybe I am crazy, maybe I will realize what you had realized now sometime later. Maybe our situation is different in the sense that I am enjoying the ride to Oz, with all the difficulties that is surrounding it. I don’t know and I don’t think there is a clear cut answer of who is right or who is wrong. It is a very difficult decision to make for us special parents of what we need to do or of what is the right thing to do. May God help us all do what is best for us and our little angels. I am very happy to have met you. I wish we had the chance to spend more time with each other, but hopefully our roads will cross again sometime in the future. In the mean time, we keep in touch through facebook and through the internet.

    Take care and God bless.

  8. Welcome back. And, there really is no place like home!

  9. http://cybell says

    Marcela hola!!!
    Que buén post, medité en todo lo que escribiste y creo que fué una experiencia de vida muy,pero muy fuerte para tí ,Nathan y Owen, sé lo dificil que fué pero eso solo sirvio para darte cuenta de que no luchas contra la corriente ,sino para darte cuenta lo unidos que són como familia ya que no importó el tiempo ni la distancia que estuvieron separados con Owen ya que hoy están reunidos y felices juntos como familia,antes te he dicho que tienes una linda familia mas aún Nathan que es un niño lleno de virtudes y con una sencibilidad especial ,creo que este viaje sirvió mucho,para demostrarte a tí misma que como madre dás todo por tu hijo al costo que sea, pero por sobre todo el amor genuino que tienen creo que fué la mejor lección,la verdad es que estoy agradecida aunque este viaje fuera duro pero aún así ,estoy contenta de haberlos conocido y haber creado un lazo de amistad entre nosotras y que nuestros hijos hayan disfrutado de cada momento que compartieron juntos (momentos que vivimos muy lindos).
    Marce yo solo deseo que cada momento que la vida te dé con tu familia lo disfrutes, seán felices y estén unidos siempre!!!!

    Creo que el mayor logro en la vida del ser humano es ser feliz!!!
    Un fuerte abrazo.

  10. http://Tischia says

    Welcome home. I love this post;)

  11. I came upon your website while reading more about what my friend’s baby was diagnosed with. Our daughter was diagnosed with a brain tumor almost 5 years ago – so while our stories aren’t the same, I wanted to let you know that what you wrote really blessed me and is another great reminder that these difficulties aren’t something meant to be waited out or fixed – and then life goes on – but rather they are a part of this life journey we are on, and full of unexpected blessings that we might have missed out otherwise.
    Abrazos

  12. http://Karym says

    Marce, adoré este post, pense que nunca lo iba a leer de tí, me siento muy contenta por ustedes que ya estan juntos en familia y disfrutando del niñito mas maravilloso, de sus risas, quejas, travesuras, felicidad y alegría es lo que siento por ustedes, y adivina, ya estoy llorando. Un beso amiga y te felicito por ser una mama con muchas fortalezas y que ya todo eso se lo pasaste a Nathan y ya es un angelito muy fuerte y Belle lo será más aún.

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