My son is at peace (and in pieces). No, I’m not trying for a laugh; although he died on Sunday, we pretended that he was alive to keep his organs going until they could be “recovered” and go forth to help or even save lives. So why am I making crude, bitter jokes? Why do I feel as though I’ve just sold a cow to the butcher?
Rationally I know that I did the right thing. I made the hard decisions long ago, when his disability made it more likely than average that he would precede me in death. It is logical that my loss can be turned into someone else’s gain, but this is no zero sum game; his organs and tissues will improve life for many others, sort of like a Schindler’s list. Maybe that is a better way to look at it. In this case, logic and emotion agree that donating his organs was the right thing to do.
Maybe I’m entering the anger stage. His life was difficult almost from the start. When he was just past two our world turned upside down when the doctors told us that he was developmentally delayed, but only because they didn’t want to put the label of autism on him yet. From the time of his diagnosis, he went to school, one of those special education kids who rarely spend time with most of the school, staying locked, until he turned twenty one; sometimes buses would not travel so far, and I would have to drive him thirty miles to the nearest programs.
When we began this journey, we were very poor. I was in graduate school, and my husband was a stay-at-home dad. With my son’s diagnosis, life changed dramatically. We needed to take him to an incredibly huge number of tests; there was always another the horizon. The stresses started to take their toll as I dove into my work and my husband developed several addictions (alcohol and cigarettes) that would later kill him. In addition, my precocious daughter, two years older than her brother, endured being told to wait because her brother needed attention, a pattern that continued over many years.
At eighteen he started to have seizures that were so severe that he would stop breathing and turn gray; the seizure would release him only after he passed out. They happened every six days, and getting the right combination to stop them involved a lot of trial-and-error. Because occasional breakthrough seizures continued, he eventually had to have an electrode implanted to give his brain a quick shock every so often, a procedure that stopped the seizures.
These are only a few of the many “not fair” moments of his life. Over the years, he patiently suffered more pain with less complaining than I see from many adults. Since he never could talk (but boy could he spell), we had to tell from his temper and behavior when he was hurting; then we had to figure out where. He was a constant challenge, and I learned to look for small indicators of possible big problems. Because of his challenges, he kept teaching me and those around him all sorts of lessons we didn’t know we needed. The patience I show towards my students is a direct result of my struggles to understand my son. The affection I show my friends is because hugs and kisses were the only way he could express his feelings. “And this, and so much more. / It is impossible to say just what I mean.” The doctors told us long ago that he would never know love and should probably be put in an institution. We proved them wrong.
My daughter never showed any resentment at her brother’s needing so much attention, and she loved him as deeply as a sister has ever loved a brother, and he loved her right back. When they were small, he would watch her dance and try to join her. Follow her lead was helpful later when we looked for a group home and finding one, explained that it was his turn to go off to college, just as she had before him. I have had to be away, working in another state for the last five years, and she took over visiting him and making sure he knew he was loved. As we waited for the process to play out over the apparently endless hours of waiting for the tests and doctors to be ready, my daughter stood by me as we hovered over her brother’s bed, saying our goodbyes.
He was a gentle soul with an enormous personality. His giggles were irresistible, and he shared private jokes, looking deeply into people’s eyes, placing his forehead against theirs and grinning. He was not a saint, but his transgressions were from ignorance, not malice. He was quite simply unforgettable, and the world is a poorer place without him in it.
Letting the recovery team take him away was perhaps the hardest thing I have ever done. The group, LifeNet, was as open, honest, and helpful as anyone could be. I also learned that science can use more than I realized, and I gave permission for them to take whatever they could use to help others, including items I had not expected such as ribs. Perhaps the shock of how much they would be able to use is what overwhelmed me; I had not realized how thoroughly the doctors would strip the body of usable parts, and I found myself picturing what he would look like after the organ and tissue recovery, recoiling in horror at my imagination.
Those images fueled the start of this post. Writing all of this down has been therapeutic and helped me find my way through the maze of emotions I’ve been going through. Healing will take a long time, but writing has reinforced the decision I made years ago. My baby is beyond my grasp now and I will never again see his eyes sparkle; now his eyes will help someone else see and his organs will help other people live. Right now people are getting phone calls to come to the hospital because a match has been found, and families are praying and rushing to get that gift from my son. I wish all of them long and happy lives.
I know I’ve done the right thing, that the horrid images were simply figments of my imagination. I know that this wound will never fully heal, but I wouldn’t change a minute of my time with him, even in his bad moods. People who know him cannot believe the news and start to cry when they find out; he made a difference, and what can be more important than that he continues to enrich others’ lives?
Saturday, Feb 22, 2020 · 9:40:08 PM +00:00
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debramagai
I have been completely overwhelmed by the responses I have received to my story. Thank you so much for caring and giving me support through this impossibly difficult time; your comments, advice, and stories have kept me from being swept away in the flood of emotions I feel almost daily. May whatever deity you acknowledge bless you with peace and joy.
As for me, I am taking things day by day. I’ve lost interest in almost all of my hobbies (cooking, reading) and am propelled forward by the needs of my students, who have been wonderful on my return to work. I realize that some day I will be able to face my loss a little more philosophically than I can now; in the meantime, you have given me the great gift of your sympathy, to which I can return time and again when life gets too hard. You have made a difference to me, and I cannot thank you enough.