My son was so tired tonight, his spirit so exhausted. How can I possibly seek respite from caring for him when I have no way of knowing how many more days we have together? At 15 he has to tolerate getting help from his mother with showering, eating, getting dressed, and so many other things he would rather do himself. In order to make sure he is cognitively challenged (because he is much closer to 15 in his ability to think than people realize) we had to find a school that is an hour away. Two precious hours of his life are spent on a bus everyday so he can get the education he needs and deserves. Mainstreaming, at least where we are, was never a viable option once he hit middle school. He was put into a special education class with a mixture of children whose needs were so different from his that he might as well have been an alien from outer space. That’s how little his teacher knew about how to teach him. The name “special education” is completely inappropriate for the variety of needs children bring to the classroom these days. I don’t blame the teachers. I’m sure they do the best they can with the resources they have. When you have a child with an “orphan” disease or a “zebra” as they are called in medical parlance, you have to do a lot of research on your own. Let me repeat that, A LOT OF RESEARCH, as a parent, not a scientist. We who don’t see our sons and daughters as “interesting cases” but as living, breathing beings who experience frustration, depression, joy. That task belongs to parents, and you do your best to become an expert about all aspects of your child’s condition. Even when reading every word crushes your hopes, or elevates them to unbelievable heights, it is your CHILD that you are reading about, not some lab subject.
Time continues its forward movement, and I’ve watched my child learn to walk, talk, and feed himself Then I’ve watched in agony as these skills were slowly stolen away. I can’t count the naps, nights, and post-surgical sleeps when I’ve held him as I tried to hold my body still, wrenching sobs hitting like earthquakes, and tears runnng like twin rivers from my aching eyes. There is no pain for a parent like the pain of watching your child suffer.
As any good parent would, (not perfect, good) you try to do as much as you can to make your child’s life a happy one. Your child hasn’t changed. Their future may have, and their life expectancy may have, but they have not. You love them just as much, if not more, knowing that the challenges they face will be so much harder than the challenges of “ordinary” children. As your child grows and becomes aware of all the ways that their lives will be different, how do you give them “meaning” to hold onto? Church provides that for many families, but if your faith does not include church and a specific belief system how do you help your child see the worth of living? As he or she faces the realities that come with his/her condition, how do you help him to see that his life still has rich opportunities? How do you explain that missing the prom, and the driving test are not the only testaments of how much of a man (or woman) he is becoming?
I want to infuse meaning into my son’s life like an intravenous line infuses fluids. How do I accomplish that? We joke about the “butt” print that is in the leather seat where he sits most of the day when he’s home, watching T.V. and playing video games. These things do not really challenge him, they merely make the passage of time flow more easily. I want to take him outside and show him rocks, twigs, branches from trees that have fallen…some connection with nature. Maybe that’s idiotic, he won’t be able to do theses things once he’s graduated from school. He doesn’t even want to. His art though, that tells me something different about his heart and soul.
His art brings meaning to his life in a way I never could. It captivates me, transports me, lifts and spins me in directions I never knew existed. It is his own world, where he imports his OWN meaning. It gives him something nothing else does, because it is his own.
I don’t know how to infuse meaning into my son’s life. I need to trust that his bright, brilliant spirit will do that on its own. I may be able to provide opportunities here and there, but the day upon day hours are his, not mine, to spin into whatever shape and intricacy he chooses. To imagine anything else is an insult to his intelligence, and a grandiose vision of my own. My sweet Daniel, your life is your own, and it is YOU who nust decide what brings you closest to spirit. May God bless and keep you on your journey, and slap back my hands when they try to intrude. You are a perfect creation, and I bow to the effervescent unfolding of you. Namaste’ my love, your life is its own gorgeous and unique unfolding. Thanks be to all that is! May the light of love always guide you, and keep you safely in it’s arms.