Today I start work for the first time outside our home in two years. I was up until 1:00, up again several times because of pain, and am now hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation. A part of me wistfully wondered what it would be like if our middle son, who is 15, was not afflicted with this horrible disease called Ataxia-Telangiectasia. I wouldn’t be up so early, because he’d get himself ready for school. He wouldn’t have to suffer through 5 respiratory treatments along with two other liquid medicines and four pills. He’s be able to sleep later himself, and the dark circles that are a constant under his gorgeous green-blue eyes would be transitory. Knowing our son, he’d probably have broken several hearts, or at least have had several girlfriends by now. Instead, every moment he spends awake takes more energy than I can imagine. He has become left-handed, not by choice, but because his right hand shakes so much he can’t really use it for much. Video games are becoming harder and harder for him to play, and he has a two-hour round trip bus ride to get to a school where there are kids he feels comfortable with. Kids like him.
In addition, he’s been coughing for weeks now. His doctors look at me sympathetically, and say there’s basically nothing else they can do that won’t make his life even more miserable than it already is. I’ll spend the day worrying about all of my kids, but especially him. The bright spot was a gift I was able to give him last night. When I reminded him that I would be working today, he looked stoic but depressed and said, “And I’ll have to have some nurse come in and take care of me.” “No honey,” I replied, “You will always be my first and most important person to care for.” I may have to lose some sleep, but to see the look of relief that came over him when he realized that for now his life would stay basically the same…there’s nothing that I wouldn’t be willing to give for that. I can’t help but think of my husband’s parents when he was young and in the hospital for weeks, months at a time. His Mom would come in and out during the day, and his Dad would come after working all day on his feet doing hard, manual work, and spend the night. This pattern was repeated constant times, with his sisters at home missing their Dad, I’m sure. They didn’t complain though, not one of his family. Just as with our son, his family knew that the suffering their child and brother was enduring was far worse than whatever they were giving up to help him. They had another characteristic that helped them. A deep, enduring faith in God. It may have been shaken at times as they had to stand by, as I do, and see their son suffer, but somehow they held on. I pray with all my heart that I can find just a little of that faith myself today. Some link to spirit that helps me keep walking through the day, smile with my new co-workers, and drink coffee. A LOT of coffee. Namaste’, and may God Bless all of us on this spiritual journey in our human forms.