I had a wonderful day yesterday with my youngest son, Carter. We’re preparing to begin a massive home renovation next week; we spent the day together, packing things, filling our van at home, and emptying it at the storage unit down the street, over and over again. At almost 12, he’s big enough to help me with some of the heavy lifting.
When it came time to pull apart our massive dining room table, I put him on one end and instructed him to plant his feet, grab hold of the apron, and pull for all he was worth. He strained and yanked and struggled for a few minutes; he changed his posture, trying to get enough leverage, but that table wouldn’t budge. “OK, kiddo, we just can’t do this one on our own,” I said. “We’ll have to wait for Spencer to come home.” Spencer is Carter’s 16-year-old brother.
“One more try, Mom! See? There’s a little crack between these two. Go pull some more. I know we can do this!”
I did. I pulled, Carter pulled, and, finally, the table gave us an inch, and then another inch until the dowels in the leaves were exposed just enough to lift the leaves out.
“Phew!” said Carter, dropping into one of the dining room chairs, sagging there in exaggerated exhaustion. “I knew we could do it! I’m getting bigger and stronger all the time. Pretty soon, I’ll be able to help you with all the stuff my brothers can do.”
On days like yesterday, it’s easy for me to ignore my fear for my son’s future. The cord accident that damaged his brain before he even drew breath sometimes recedes from my consciousness; I don’t think of the possible horrors that could exist in Carter’s future. He is himself: witty, affectionate, and determined.
Grateful as I am for my brief respite of yesterday (and the relative stability that Carter has enjoyed for several years), his challenges are a central fact of our family life. We live in Albuquerque; we are a blended family; Carter, our youngest son, had a prenatal hypoxic brain injury that resulted in serious mental illness and borderline intellectual functioning, among other things. We are defined in some essential way by Carter’s limitations and the extensive care required to keep him safe and somewhat content.
We are defined, too, by fear. Carter’s diagnoses include bipolar disorder with psychotic features, and the prognosis for a child who is as ill as he is (and at such a young age) is very poor.
Often, when I talk with people without disabled children about my fear of the future, I am told, “Well, none of us knows what will happen with our kids!”
Of course that’s true, but only by a little bit. Together, my husband and I have three neurotypical children: ages 20, 18, and 16. While we know that all kinds of terrible things could happen to any of them, we also know the most likely scenario is that they will move into lives of their own, and those lives will have challenges, possibly even devastating ones, but ultimately, everyone will be OK.
With Carter, everything is different. Will he ever live independently? If not, will we find an appropriate supervised living situation for him? If we can’t, will he be OK with living at home with us in his adulthood? Will that make him feel angry and infantilized? Will he end up in jail or homeless, like so many people with serious mental illness do? Will he become addicted to drugs? Will he become a victim of violence? Will he be confused by instructions shouted by police and be hurt or killed by them? Will he take his own life?
All of those fears are very real for me, and not at all theoretical; I have watched them happen to other families, and they have happened in my own family. When I think of my aunt’s suicide in 1979, I want to clutch Carter to me and give him everything he wants; to make him happy in any way possible.
That would never work, but it is the impulse I struggle with. Like so many of my impulses when it comes to Carter, it’s born of fear: fear of the future, fear of tragedy, fear of helplessness. Fear of returning to the chaos and terror we lived in when Carter was at his very sickest. Fear that I won’t be able to halt his next suicide attempt the way I foiled his most recent one. Fear that as he gets older, he will begin to see me as an enemy instead of an ally. Fear that I will have to go to bed some night, not knowing where he is; if he is hurt; if he needs help no one is offering. Fear that he will resist or refuse to take his medicine. Fear, fear, fear.
Years ago, long before Carter came into the world, I tried to be a person who lived in the present. I thought it would make me a happier person, if I wasn’t focused on regretting the past or fearing the future.
True enough, but I couldn’t do it until it was nearly a matter of life-or-death. In 2011, when the very worst period of Carter’s illness seemed to be behind us (though it took us a long time to trust that his stability would last), I couldn’t settle into the relative calm. I had lived at high alert for so long that I didn’t know how to stop.
Some of the recovery came simply with the passing of time, but I also became rigorous in disciplining my thoughts. If my fear distracts me (What if? What if? What if?), I immediately look at my feet. What am I doing today, now, to make this the best possible, most healing day for Carter? For me? For my other children? For my husband? I pay attention to my actions in the here and now.
I can’t prevent Carter’s going to prison when he’s 22, but I can make sure he takes his medicine today. I can’t stop a person who may victimize Carter in 2019, but I can try to help him find some joy today. I can strengthen my marriage, both for my husband and me, and so that Carter has our relationship as the firm backdrop of family life. I can work to change some of the systems that make life for Carter and others like him more difficult than necessary. I can nurture my friendships, and help Carter nurture his.
I don’t know what our future looks like. It may be tragic. For today, we live the life we have, and we watch our feet.
About the Author
Adrienne Jones lives in Albuquerque with her husband and children, and in the hours just before dawn, you can find her at her desk in the little office next to the kitchen, writing stories. She blogs at No Points for Style.
Find links to almost everything she does on the internet at about.me/AdrienneJones.