The window

Today we have a guest blog from Marcela De Vivo, mom to Nathan, 4, pictured above. In Marcela's 36th week of pregnancy, Nathan was diagnosed with severe holoprosencephaly, a malformation of the forebrain. His parents were told his odds of surviving birth were one in 20 million. If he did, doctors said he would be a 'vegetable' and not have a meaningful life. I read Marcela's blog, and one theme that kept popping up was the struggle between wanting to 'fix' our kids through therapy and accepting them as they are. I am delighted that Marcela has chosen to elaborate on that topic. It's one that's dear to my heart. Thank you Marcela!


The window
By Marcela De Vivo


When my son Nathan survived birth, I was told I had a very small window for promoting his development. That window – propped open a few inches – could improve the quality of his life; help him maximize what little brain he has; and teach his brain to rewire itself and function, at least a little.

Nathan was given a three per cent chance of survival at birth. Then he was given a three per cent chance of living past his first year. He beat those odds. The least I could do, I thought, was keep an eye on that window for moving his development forward. The brain is most plastic and malleable during the first three to five years of life, I was told. I had those years to help Nathan’s brain rewire itself so he could learn to walk, talk and hold up his head.

The first year we followed the conventional route. We did as we were told. He had physical therapy and occupational therapy and developmental therapy. We stretched him and did the homework given to us by the therapists.

The only problem was that by the end of that year, Nathan hadn't gained any functional skills. I saw our window of opportunity begin to close. He’s not receiving enough hours of therapy, I thought. That’s why he’s not improving. So I found a pro-bono advocacy group to help me approach our regional, early-intervention services and we asked for more hours – more, more, more! More is better, right? So more we got. By the time Nathan was 18 months old he was receiving about 15 hours of therapy each week.

I kept my eye fixed on that window and we worked hard on his rehabilitation. He’s already a miracle, I told myself. He will make more miracles happen.

But by age two Nathan still hadn't mastered any functional skills. I thought I had better pick up the pace. Everything I knew told me that it was simple anatomy: The brain rewires itself, we have to keep going.

Maybe it’s not the quantity, I thought, but the quality of therapies that make the difference. Maybe we needed to find more effective alternative therapies. So I began the search: Stem cells; G-therapy; IAHP; suit therapy; Tomatis listening training; hyperbaric oxygen therapy. I spoke to moms all over the world. I researched late into the night and chose a few therapies that we started intensively.

And all the while, my eyes were trained on that window. We would make it through, I told myself. Nathan might be a late bloomer, but I would pull him – by the hair if I had to – through.

Then Nathan turned three and he still hadn’t progressed. His head and trunk were as floppy as ever. The muscles in his arms, hands and legs continued to be tight. I was missing something, I thought. I had to be missing something.

Perhaps we simply hadn’t done any therapies intensely enough for a sustained period of time. Perhaps I just hadn’t found the right therapy. I heard about a type of physical therapy called Medek. We packed our bags and went to South America to see Ramon Cuevas, who invented Medek. We rented an apartment and lived in Santiago, Chile for three months. Nathan saw Ramon twice a day, every day, for three months. Medek had gotten so many kids to walk. This was it, I thought. This was the one. I could feel it in my bones.

Except my bones were wrong. My bones didn’t anticipate that three months of therapy with Ramon Cuevas wouldn’t be enough. Pregnant and defeated, we headed for home. Our small window was now barely open a crack.

But there was still a sliver of light. Where there’s a sliver, there’s hope, I thought. I figured it was a matter of the combination of therapies. I realized that maybe not one therapy could address all of Nathan’s needs, so I proceeded to assemble the perfect combination of alternative therapies: Feldenkrais; Advanced Biomechanical Rehabilitation; Cueves Medek Exercises; Cold Laser Reflex Integration; G-therapy; Biomedical Interventions. This was it. This was what I’d missed all along: We weren’t doing the right therapies in the correct combination for a sustained period of time.

Recently Nathan turned four. I took stock and had to acknowledge that Nathan hadn't made functional gains. He has learned to move in a walker. He is in the early stages of learning to use a communication device. But still his head is floppy and his trunk is floppy. He can’t sit up or use his arms or manipulate his hands.

And I wonder. Is it time? Is it time to accept that Nathan is just the way he is? Is it time to accept that Nathan simply is the way he has to be? And if I accept him just the way he is, do we continue with therapies? Why all the money and effort if he isn’t going to improve?

And then one day it hit me that maybe that window of opportunity wasn’t Nathan’s – maybe it was mine.

Nathan is fine. His soul is perfect. His heart is gold. He is a healthy, happy child with physical limitations.

Maybe the window we have to crawl through requires me to love and accept my son – just the way he is. Maybe the opportunity is for me to change my paradigms and realize what’s truly important in life: to live in the present; to appreciate what I have; to express gratitude towards others; to forget about petty problems; and to focus on loving and enjoying the people in my life.

I don’t know for sure. But what I do know is that today, right now, Nathan is healthy and happy. And I – I – am learning to push myself through that window.