Journey Into and Out of Darkness
Two years ago I would say I did not have a care in the world, but I would be lying. I knew something was wrong with my son, something I could not explain, something that was not disappearing like all other of his sporting injuries garnered while playing tennis. A piece of him was melting into an abyss and I was standing silently by watching it and easily making excuses for a pain that ravaged him. Yes, I was the good parent and spent hours in physical therapy, specialized trainers, coaches, doctors offices and any therapy, vitamin, mineral or herbal supplement that would magically take away a pain that we both felt but neither of us wanted to admit. Two years ago I would say I did not have a care in the world, but I was lying and my cares and the confusion of the medical community coupled with my son’s sporting career and identity were about to be destroyed. My cares were real, but not founded and soon became recurring nightmares. I found myself in a position of trying to find a magic wand that would never appear…oh, it teased and taunted but never appeared. This is my story of a path that many have walked before each of our stories create a different scenario but parents of a child with an illness will realize that while the darkest of days will be upon you there are rays of light…the twinkle of faint stars on some of the weaker days and on others full sunlight gleaming in…only to fall to night again.
True blindness came over me as I drove to pick up my son Kyle from a tennis match. I was so proud of his achievements as a sophomore playing first on the varsity team and coming off playing second as a freshman. Tennis was not only his chosen sport it became a way of life, and the bond that kept us close. I was his teacher, mentor, chauffer and of course just plain “mom”…I was everything that made up tennis and parenting all rolled into one person. In hindsight I can see it was a damaging position to put myself in, but who would ever think he would lose tennis…that was not even on our radar. Walking up to the courts on that dreaded day will never leave my mind, his body, mind-set and sprit gone missing are etched into a memory like a recurring nightmare. Instead of a match and cheering I came to find Kyle laying on the cement, coherent but writhing in pain. “Well, this won’t help you win a match, now will it,” I said this will a very sarcastic and caring tone, frightened as what his response would be, as I waited I noticed a bag of ice near his back area. He stared at me for an eternity and said, “I need a doctor now, mom help me.” While his voice was calm his body was not. I turned around and anxiously began calling, while dialing his pediatrician, physical therapist, masseuse I realized I had no idea what I was doing and a large lump filled in my throat and for the first time I had this uneasy feeling that I could not fix this…but what was this, that was soon to be the million dollar question.
Twilight had befallen upon our family we still had hope, could talk about tennis and of course go to all the professionals that were to “fix” the problem, there was hope tinged with sadness that was noticeable as I picked him up from school and he should have been on the court. Our conversations became more route and focused on the matter at hand to get him back on the court for his future and college tennis, which was his dream and more importantly and what was looming larger everyday his happiness. Kyle had tennis and tennis had Kyle, this was a rope they walked together and with one end broken so was the other, it hung miserably and its sadness was turning into quiet anger.
A bright light soon came into our lives as a marvelous physician found an area that they could tackle that would take away the pain…I will not go into this, as while it worked for 6 months, it was not the correct diagnosis for my son. I greatly respect the failed surgery because it gave my son an extra six months of hope and time to say good-bye, not on his terms, but good-bye none-the-less. Again, we were in the dark and this was such a deep darkness that while we exhausted all methods, physicians and monies to bring about a miracle, it was clear that no miracle was going to appear. My journey was just about to begin. While I maintained my daily outward appearance and work standards as a teacher I was a mess when my mind was at rest. All I could think of is Kyle and why this pain had overcome him and why there was no answer. I thought at this point an answer would be my cure and my light. Soon I found that again I was wrong. My path was not to stop at an answer it would continue far beyond.
Ankylosing Spondylitis a rare form of arthritis that affects the spinal column, hips and neck was to be the answer doctors settled on, ironically a month before the professionals reached that answer I found it on the internet highway. Suddenly, my tiny family celebrated as if we won the lottery. Spending hours a day researching AS I still tried to find that magic wand, coming to the realization that no white rabbit was to be pulled from a hat, life is not about magic it is about acceptance and fortitude. While AS is not a death sentence it is painful, confusing form of arthritis. Kyle is not the typical case, but it is the path that we are now on together as a family. We embrace AS like a long-term house guest…a bit annoying and never ever leaving but we will not allow our son’s dreams dampened but raised as he fights through an illness that will never leave his body but like the house guest he will learn tolerance, as his once dark path finally has a glimmer.
Kyle graduated from Phoenix Christian High School, in Arizona and while accepted to University of Idaho, he has chosen to defer to take time to allow his physicians to control the AS. He will attend Glendale Community College. As for me I will continue to walk out of the darkness and into the light of acceptance of a disease, I will never stop the fight of finding a cure but I will accept and love a son that never asked for such an ailment and as we re-build the bond that is no longer based on tennis but on love… I still have the dream he wins the match, one based on a greater battle than a net and a ball. It will be the win of a lifetime, and it is his time to take this on with the same vengeance that was used toward a sport, which now seems so silly but gave him the inner-fight to handle anything that crosses his path.
All I can do as a mother is sit back and guide my families journey out of darkness and into the light of acceptance, maintenance and the dream of a cure, and that is exactly my chosen path.