Tuesday, June 24, 2014
What Treatments Have You Tried?
The most common questions I get asked about my son revolve around the treatments and therapies we have tried and my opinions about their success or merits.
The honest answer is "too many to count," and "I have no frigging idea what has worked and what hasn't." Does that surprise you? It shouldn't. Here is why:
For the last seven years of our lives we have committed everything to helping our son. We have spent thousands of dollars on treatments, therapies and procedures (most of which were not covered by insurance). Most of these treatments, therapies and procedures were happening simultaneously. The biomedical treatments we have pursued have focused mainly on healing his gut issues and clinical symptoms.
I would be lying if I said that our first venture into the biomedical arena didn't revolve around a search for a "cure". It did, at first.
Was that naive? Maybe.
Was I searching for a phantom? Probably.
Was it misguided? I don't know.
Would he have made the same progress without these treatments? I will never know.
Do I regret it? Absolutely not.
You see... here's the thing: My early years post diagnosis were rough. I was drowning in grief, self-pity and fear. I was starving for some sense of control... and hope. Biomedical treatment represented a concrete target to shoot for and a plan to execute. It gave me the hope I desperately needed to wrap my brain around the curve ball that was thrown to my family and gather the courage to face it. I wasn't ready to hear, "different, not less" yet. Does that make sense? Seeing doctor's visits and therapy sessions on the calendar got me through many a dark night.
Looking back, these pursuits... even the ones that had no discernible positive effect on my son, bought me the breathing room I needed to accept him for the cool little kid he is and unique individual he always will be.
Eventually, my excitement for the doctor's visits changed from a hope for a miracle cure to easing his gut issues and making his life more enjoyable. He still takes a cocktail of medicine and supplements on a daily basis. But I am no longer looking for a magic elixir at the bottom of the bottles.
I try to avoid the topic of specific treatments and therapies for our kids. Often, the discussion degenerates into bad blood much like discussions of politics and religion. Who am I to judge? I just share my journey honestly and humbly. If it helps someone out there, I am honored. But I am not a scientist, and I am sure as hell not an expert. I don't even know if I qualify as an advocate. I'm a Dad searching for a path in the wilderness to help my family. I look back often and they are still with me... and still smiling. That's good enough for me.