We all change, shift, and grow as people over the course of our lives. I recently read a summary of a longitudinal study of personality — monitoring the same group of subjects over sixty years. This study found that a person’s personality and indeed identity shift so much over time (the study followed people from ages 14 to 77) that at seventy-seven year old, one’s personality looks so different from the fourteen-year-old’s perspective that the changes would render the person unrecognizable. We are all strangers to ourselves given enough time… Having a disabled person in your life accelerates this process.
By December of 2008, Koan was about 15 months old. We knew with some certainty that Koan was going to face some really significant challenges that we had no experience on how to manage his condition. But, much like the proverbial frog in the boiling pot (he doesn’t jump out because the heat increases so incrementally), these changes were not shocking or revelatory. The process was so gradual that we just felt like it was just our new normal. And, yet over these few months, Jeri and I had rethought and changed our beliefs about so many things. I know by the end of that year, I was already a very different person.
Looking back, 2008 was a wild year with Koan. This was the year when we had to come to terms with the “why” question. We spend so much energy trying to figure out why he had seizures. This was a really reasonable approach. Our thinking was that if we knew the “why”, we would have a better, more targeted (and hopefully, successful) treatment plan. So, we looked into all types of possible different diagnoses. He had two EEGs that year. That’s the main test for epilepsy. Each of these were really interesting… While Koan was not very mobile, he still did not cooperate with the process of gluing twenty or thirty receptor-patches all over his head. He also would not lay still on command as required for portions of the test. Not surprisingly, the results of both tests were ambiguous. He underwent a large battery of genetic testing, too. All the tests came back with negative or inconclusive results. By the end of the year, we knew we had a disabled child, but no idea why or what to expect. After all the tests, it became clear to me that the why really didn’t matter — since he did not have a clear-cut diagnosis, there was no prognosis or standard mitigation/treatment plan. We just knew at the end of that year, we had a kid that we needed to love and somehow set the stage to keep him moving forward — even with just small steps.
That being said, it was still a really painful and difficult process to live through. To qualify for the Iowa Medicaid ID (Intellectual Disabilities) Waiver, we needed to have Koan psychologically evaluated for development. Jeri and I chose to do this at the University of Iowa’s Center for Development and Disability. The staff and psychologists there were great — very caring and compassionate. But, there’s no denying it’s very tough to sit with someone for 90 minutes answer question after question about what your child cannot do. Even though I thought I was ready, seeing the written report — Koan was chronologically 14 months old, but developmentally performing at 3-4 months — was devastating. That document codified his condition. It was real.
I look back now upon what I thought and how I acted when raising my older two kids, Sydney and Tiber. I spent a lot of time worrying about them. I know this is normal and natural. But, from where I’m at now, it seems like such a waste of energy. Sydney didn’t crawl and walked late — about thirteen or fourteen months. Since she was our first child, these weeks seemed to draw out very slowly. But, of course, she did eventually walk. And, now, no one looks at here and thinks –”Oh… I bet she walked later than other kids…”
Tiber was bit more of a challenge. He still has some issues expressing himself verbally. Speech therapy has been really helpful for him. Tiber also needed some help with attention (medication) when he was in elementary school. But, like his sister, he’s very, very bright. The problems Jeri and worked through with Syd and Tiber did demand our attention and focus. But, looking back the emotional investment I made in these issues was disproportionate to their intensity or importance. I think about that a lot going forward. It’s not like Sydney and Tiber don’t have problems crop up. Some of these are quite serious and demand a lot of attention. But, my filter for what we get really worried about is now (and I think forever) changed.
I’ve written a lot about perspective shifts. Having Koan in our lives has made me more present and grounded. He’s changed my thoughts about disabled people, their value, and what we need to do as a society both morally and ethically to support them. But, probably more so than anything else, having Koan in my life has given me a deep and perpetual understanding of what really matters. I think the old saying goes something like this, “The key to life is not to sweat the small stuff. And, everything is small stuff…” I’m not suggesting that I don’t spend time and energy on worry. I wish I could say this was true. But, the minimum threshold of what I worry about is really different. I spend (or at least really try) more time being grateful what’s going well than worrying about all of the things that can and have gone wrong.