A little piece of heaven

My Journey to Oz did not make me lose faith, or hope. My journey to oz only gave me strength.

I lost many things during my journey:

• The painful mind of expectations. I no longer expect anything out of our treatments and programs. If they help Nathan, great! If not, that’s great too.
• Instant Gratification – I now understand that this is a life-long journey and that there is no treatment that will be an instant miracle. All of Nathan’s improvements will happen over time with a lot of patience and hard work.
• Fear. I realized that I was consumed in fear of the future. I was afraid for Nathan, for all of the possible ways that he can suffer. My journey helped me find courage in my heart. I now realize that fear exists in the head, in a contrived future. If I stay in my heart I stay in the present, in my love for Nathan, and in that love there is faith and beauty, and no room for fear.

I have not lost hope, I have gained more than ever before. I have gained the most wonderful freedom, shedding 1,000 pounds of worry and anxiety.

And I have gained so much enjoyment of my son, and sheer appreciation.

To the mothers of special needs children reading this blog – I have not given up. I am stronger than ever before. I have just settled in for the long haul.

Tommorrow we start a new program for Nathan, integrating everything we have learned over the last few months. You can see the schedule here:

Nathan’s Schedule

And now for some cute pictures:

This is the greatest, most awesome walker I’ve ever seen.

This was the first day he tried it. I’ll take another video tommorrow to show you how much better he’s doing in it!

And there are some very cute PHOTOS HERE.

I am sorry it’s been such a long time. Like Dorothy I’ve been on a journey down the yellow brick road of my own personal oz. Like Dorothy I’ve come to realize, “there’s no place like home.”

To explain this, I have to back up to the beginning of this journey, the beginning of this story. One of my New Year’s resolution was, “I will do whatever is in my power to help Nathan.” What I really meant was, “I will spend every ounce and fiber of my soul, work hard beyond hard, to fix Nathan.” Now I have to tell you a little about myself so you can understand more about what this means. I have never failed at anything that I’ve put my heart into. I work harder than an ox, faster than a fox, beyond what some think is humanly possible, to achieve goals I believe in. So with this information you can understand part two of this story.

It started in late January when we went to Rutgers for a neurocognitive assesment. I wanted to learn more about Nathan’s brain. In the same trip we went to Oregon to meet Charlie and Consensao from the Reach Institute. We learned this program and came home eager and excited to implement it. I also learned about an herbal powder from Malaysia which I promptly ordered.

Only a couple of weeks went by when I learned about Stem Cell Therapy. Not long after, Nathan and I were on a plane to Dominican Republic to receive Nathan’s first injection of fetal stem cells. We left on a Thursday, and returned home on a Sunday. Monday we started a new treatment, Intensive Model of Therapy at Napa Institute. I was seeing some exciting progress by the end of all this, he was starting to hold his head better, his trunk was stronger, he was really making progress.

The treatment at Napa lasted 3 weeks, and the Monday after he finished we started yet another treatment. We started taking him to San Diego for Osteopathy Treatmentswith Dr. Viola Fryman.

And this, right here, is the reason I’ve been missing in action. I’ve been in Oz. I’ve been meeting the cowardly lions and heartless tins of my own consciousness. I’ve been observing my inner scarecrows and fighting as hard as I can to get to the end of the yellow brick road.

And here I am. I’ve made it to the end. At the end of my journey I collapsed with sheer exhaustion. Never, in my whole life, have I been so tired and overwhelmed. Imagine how poor Nathan must’ve felt. He’s the one that’s been DOING it. Just imagine.

So here I am. Sam I am. I am sam.

And what’ve I learned? I can’t fix him. I can’t fix Nathan. No matter how hard I work, how much we do, how many treatments we try, how many therapies we do, how much money we spend, how much we sacrifice..I can’t fix Nathan.

Most importantly, Nathan doesn’t need fixing. To you non-spiritual people reading this, shut your eyes. Don’t read this next sentence. But in my meditation yesterday I heard a voice in my head, “Nathan does not need your help. Nathan needs his mommy” And thus my journey ended. It stopped me cold in my tracks. The tornado stormed in and flew me back home.

All along, Nathan was in my own backyard saying, “I’m fine. I dont’ need your help, I’m fine.” I’ve heard this before. But I guess I had to go through my own journey to believe it. It happened after I observed him in therapy Friday morning. He was with Natalie his wonderful occupational therapist, and they were working on the same thing they’ve been working on for a year, and Nathan was as floopy and noodly as ever. And I was struck by how little he’s changed, how little he’s progressed, even with everything we’ve done. Please dont’ get me wrong, I’m not being ungrateful, I’m just being realistic, objective. After everything we’ve done, Nathan is maybe just two inches a head.

As I ran upstairs to cry, I heard the voice. And I knew the journey was over.

I’m still learning to live with this new reality. Maybe, just maybe, nothing I do will help Nathan, and Nathan will be Nathan. And what a wonderful Nathan that is. Maybe, just maybe, I will have to accept that Nathan will always face severe limitations.

And maybe, just maybe, Nathan is exactly as he should be.

I received an email from a wonderful person recently, he said, “Your son is a beautiful and a very enlightened little boy. Work with him on a much deeper level, and realize that there is nothing “wrong” with him… indeed, there is so much “right” about him, I can feel it. He’s come here to do great work and miracles.”

What perfect words, what perfect timing. Mabye, just maybe, he is here to fix me. He has already offered me gifts greater than I can begin to describe. I’d have to write a book to describe what he’s brought into my life (one day I will).

So at home in my own backyard I realize, not only am I not supposed to fix him, he’s here to fix me. He’s here to bring a message of love and light, a message of hope and faith.

I’ve come full circle. Today I looked at Nathan with joy and wonder. As we went to the beach and I tried my hardest to hold on to his floppy noodly body, I didn’t once try to fix him. I just accepted my noodly boy. And we had more fun than we’ve had in ages.