The Gift

It was June 8th,1974 and on a warm evening in the territory of Amapá, now a state in the northern part of Brazil, a baby boy was born. Other than being a couple of months premature, the one thing that made this birth a bit more interesting than any premature birth was the fact that this baby had its hands and feet completely bent inwards, almost fused into his arms and legs.

If you’re more of a visual person, imagine what it would look like if you could turn your hand from the wrist toward the inside of your forearm to the point where forearm and palm were parallel to each other. Now apply the same visual “effect” to the feet and forelegs and, last but not least, fuse the thighs to the foreleg/feet combination, and you should have a clear picture of what that baby looked like at birth.

As you probably already guessed, that baby was me. Oh, and did I tell you that it was my mother’s birthday too? Yes, I was born on her birthday, and she believed that I was her birthday gift.

There was only one name in her opinion that would fit in with the occasion, and she named me Og (pronounced Augie). You see, she was a big fan of the writer Augustine “Og” Mandino, who is mostly known for writing the bestselling book “The Greatest Salesman in the World.” She liked that book, but her favorite one was a lesser known one titled “The Gift of Acabar.” Since one of Mandino’s main philosophies was that everyone is a miracle and she considered my birth a miracle and a gift to her on her special day, she felt that Og was the perfect choice for my name.

I can’t claim to remember much about my first four to five years, but my mother told me that from the very beginning my doctors didn’t believe that I would survive for too long. My pediatrician quickly diagnosed me as being born with Congenital Multiplex Arthrogryposis (or arthrogryposis for short), and the fact that I had been born two months too early, coupled with the lack of resources (financial for my young parents, medical for the small town’s hospital) only meant one thing for them: I would not live for too long.

Instead of accepting her fate and going along with the predetermined path established by my doctor, she did the only thing a loving mother could do: she started looking for a second opinion!

Even when that too wasn’t very promising, she didn’t give up and what took place from that point onward was her long, arduous journey across the country, seeking for a treatment or a cure, anything that would give her hope that her son would lead a longer, better life. She too vowed that one day she would walk back to that first hospital where a doctor told her that I would never walk or live past the first two years.

As I mentioned earlier, I don’t remember much about those early years and what I do remember are mere glimpses and fragments of memories, but I do remember this:

  • When it came down to finding a treatment for me, she never accepted “no” as an answer She never gave up!
  • She walked or begged for rides so that she could take me to any place where there was even the slightest hope for a treatment;
  • She starved herself so that I could have more food;
  • She got kicked out of many hospitals and clinics for arguing with doctors and nurses who wouldn’t give her hope, or when she didn’t want to leave me alone past visitation hours;
  • She gave me my first glimpse of what dedication, unwavering love, and hard work are capable of achieving!

Thanks to my mother’s dedication the rest of this story gets a bit more upbeat: she found a place offering her the hope that, with a few corrective surgeries to straighten out my limbs and with a lot of physical therapy, I would have a better chance of living past my childhood. She fully embraced the opportunity and a marathon of long, painful surgeries, followed by even more prolonged (and more painful) rehabilitation and therapy period began.

I’m embarrassed to say that my fragmentary recollection of this period is full of glimpses of the times when feeling excruciating pain (remember that I was between two to five years of age), I would berate my mother for putting me through those surgeries, blaming her for the pain and agony I was feeling. To this day I still don’t know how or where she found the strength to put up with my attitude and for not giving up right there and then. But put up with my crying, cussing and abuse she did.

I also remember very clearly two other things:

  • Feeling completely dizzy when, as my limbs became stronger and straighter, I was able to put on braces on my legs and stand on my own for the first time at age seven;
  • The look of amazement on the face of the doctor who had told my mother that I would not walk when my mother took me back to that hospital, and I walked into the consultation room;

At the tender age of 7, I was now mobile and ready to explore and try out all that I had missed thus far.

comments powered by Disqus