My wife used to say that our kids were a stable of thoroughbreds. We had 4 magnificent stallions and a unicorn. The unicorn was beautiful, magical, and enhanced the lives of anyone crossing his path. He was creative and brilliant. He taught us about true forgiveness. He taught us to love unconditionally and not to judge. He taught us to laugh and have fun under any circumstance. Over the years we tried, foolishly, to turn the unicorn into a stallion. The unicorn tried valiantly to become a stallion. We all came to realize that a unicorn is magic, and can’t be kept forever. Kyle was our unicorn, and we were blessed to have him 24 years.
Kyle's (Ryan to us) memorial service was yesterday. There were hundreds of people - so many people they had to set up folding chairs in the hallway outside the door. It was an awe-inspiring testament to the power of his life, and the impact he made on so many people's lives. He packed more living in his 24 years than most people would in 10 lifetimes. The service was beautiful. Kyle was a very spiritual person, and had a couple scripture verses on his wall they incorporated into the service. We sang his favorite hymn - "Life Flows On In Endless Song" at the end. There was a guitarist playing 2 songs by his favorite band, Five Iron Frenzy, "Every New Day" and "If You Could See Me Now". It was wonderful.
Now comes the inevitable soul-searching.
I'm wondering if it was a mistake to medicate Kyle. My wife says absolutely not, it was the right thing to do. His most debilitating symptom prior to treatment was his all or nothing perfectionism that manifested itself in terrible outbursts of temper. Not directed at other people, but at himself. It was so painful to watch. His treatment did take care of that, and we were all thankful.
But as things went on, as so often happens, one med begets another, and before long he has a laundry list of medication. He was medicated to the point he wasn't experiencing life at all. His last 2 weeks seemed to be good weeks for him, but he still seemed over-medicated.
His doctors and care workers were exceptional. This was NOT a case where they callously over-medicated. But Kyle would ask for more and more. He couldn't sleep, or his anxiety was particularly bad, and so forth. The doctors, truly interested in his comfort, would try to help him. This is how he ended up with such a large amount of daily meds.
His death appears to be a freak accident. He fell face first into a coffee table in his room. The TV cord was exposed, and the TV was on the ground. We are guessing he tripped on the TV cord, and fell into the table. This accident could have happened with or without medication or alcohol, so I'm not blaming his death on that.
So why am I questioning if medication was the right choice? It comes down to a quality of life issue. Early in his treatment, when the Lamictal started to balance him and took away his inward-turned angry outbursts it was a very good thing. As things continued, and they added more and more medication, he lost the ability to do many things. Towards the end he was having a hard time leaving the house or meeting anyone. The disabilities he'd acquired were as debilitating as the one's he'd fixed. Having the benefit of hindsight I'm wishing he could have lived his last few months in a different way. Or do I? The last few months were very memorable to my daughters, who would hang out and play games with him every day this summer. The old Kyle would have been gone half of the time, and we'd have been worried constantly.
I will wrestle with this the rest of my life.
If anyone else is in the same boat, take your child for who they are. My wife checked on Kyle every day. She hugged him every day, and told him she loved him every day of his life. Whether he was in treatment or not, or properly medicated or not, is meaningless. It likely didn't impact when he died. What did matter were the people and opportunities that made him feel good about himself. The opportunities his family had to make him feel loved and important. That we can look back and know we hugged and told him we loved him. When it's over, unconditional love is all that matters.
