Category: journal

Year Thirteen

~ sehaldorson ~ Leave a comment

3/4/18 | Today you turned thirteen years old.

For the second year in a row, you have strep throat on your birthday, so it is fortunate I didn’t plan that big party I have imagined but never held. You lack the ability to tell time, to know what a minute, an hour, a day, a year is, and so I am able to squirm off the hook. A few days ago, while you played in the bathtub with your cars and toy bears, I whispered to your dad about how I’m disappointed in myself, how I let my own ambivalence about your birthday prevent me from providing you with a birthday event you would delight in–trampolines, bowling, maybe visiting dogs at the Humane Society–, because you never realize what you are missing. Some days I think I should not be forgiven for the ways I skirt around motherhood like it is a fire I cannot get too close to for fear of getting burned. I am sorry that I cannot fake it better, even for you.

I thought yesterday that maybe we should just stop celebrating your birthday altogether. What a relief that would be. I wandered around the toy store looking for gifts to buy you, and keenly felt the pointlessness of my effort. Aisle after aisle, there is nothing left for me to buy. We own all of the toys for babies or toddlers that might interest you, and everything else is, well, not for babies or toddlers, especially one who is 90lbs and nearly as tall as my shoulder. I bought some foam blocks to add to our collection because Legos frustrate you and anyway you cannot imagine the castles or spaceships you might build, that might spirit you away. I bought a dog-shaped sprinkler for when the weather gets hot again, because you still love water as intensely as when you were a baby. There is also a Thomas & Friends train track. We will wrap your presents and you will thrill at the unknown even if you barely pay each gift itself a second thought after opening.

On my drive home from the store, a fragment of what I thought was a poem flitted through my mind: “…I put away childish things….” I thought perhaps it was Kipling, but a quick online search and I was reminded the line comes from First Corinthians, the Bible’s chapter on love.

11 | When I was a child, I spoke as a child, I understood as a child. I thought as a child; but when I became a man, I put away childish things. 12 | For now we see in a mirror, darkly, but then face to face. Now I know in part, but then I shall know just as I also am known.

You won’t have that opportunity, I suppose, to transition into a man. You’ve just barely become a child. At six feet you may be six, if we are lucky. I don’t know what constitutes a teenager, an adult: is it merely years on the earth? Must we also have our years and our body and our mind in sync as well? Who would have thought, thirteen years ago that this would be our reality. I feared, but I couldn’t have known. I’ve stopped trying to predict our misery; and yet, holidays release a predictable, yet still relentless, wave of depression that subsumes me before I can anticipate its arrival. Even as I know that birthdays don’t change anything. Yesterday and tomorrow, we are the same.

When you turned one year old, I wrote to you in a journal I once thought you might read: “I am so ambivalent. You are not what I expected and yet you are everything. In many ways, you are as puzzling to me as you were the day you were born and yet I know you as well I know my own body.” In thirteen years, those words are as true and as bittersweet as when I wrote them. It seems that as you grow, the mirror will remain dark, and I will still only ever have a partial understanding, a glimpse, of who I am and who you are to be.

In the coming years, whether we count their passing as worthy of celebration or no, our little family will stumble along with our good intentions in the lead, hoping to get this one life right at least part of the time. Enough will have to be enough. I can forgive myself for not yet telling you it is your birthday this morning, for not throwing you a party, for not knowing how to raise you all of the days in between the years. The rules became inapplicable to us so long ago. And I can accept, because I have to, because I’ve learned I have to, that I cannot guarantee you a safe place in this world. Age will not bring you independence, but I will joyfully keep you by my side as long as I am alive to hold your hand in mine.

Perhaps every year, I should be celebrating my birth day on yours. Your birth, your life, has sculpted me in ways I innocently, naively, could never have imagined. I dreamed of castles, an idyll, but was rewarded with something more elementary. I was reinvented at your birth. And now, after thirteen years of growth, I can say with certainty I need never have worried as I did then that I wouldn’t love you. Or as the seizures came, as the disappointments came, that I couldn’t love you. If there is one star that shines brightly, inextinguishable, in the dark and fathomless sky of our future, it is love.

Charades

~ sehaldorson ~ Leave a comment

Sometimes it shocks me how much other children talk. I’m just not used to how much little kids can say with their high little voices, bulleting out words, often so stream of conscious and unrelenting as to wear me out just to overhear. Today, I am struck by this in a public restroom. When I picked a stall next to one housing mother and child, and the child is talking all through the whole procedure of peeing, it astounded me. My 11-year-old son doesn’t yet pee in toilets, dependent still on training pants. (I worry he needs more disciplined parents to get him over that hurdle, but oh lord how we have tried.) But he also doesn’t yet speak. At least not in a way you would call speech.

Certainly he doesn’t talk like this little girl in the stall next to mine. She talks about the pee on her leg, and the amount of toilet paper she would like to use, and how cold the snow is when she doesn’t have her mittens on, and how she would like pink mittens please. Her mother reminds her that her mittens are pink, and she replies, “of course” in a way that is clearly mimicked, but also makes her sound world-wise and somehow forgetful.

When Noah notices a color, he says “yellow,” which means “color,” but also might mean “yellow” or maybe “blue.” Yes, he says “tired” and “no tired” and “up” when he is sleepy or not sleepy, but that’s about as revealing as when a dog sits by the door wanting to be let out. This may seem ridiculous, but when we first learned that Noah might never talk, I thought I might be ok. Worse things, right? After all, we’ve owned dogs for years and I’ve had fruitful and loving relationships with each them. Hardly. We only want from dogs what they are able to give. We want more than companionship from a child. With a child, we want to see ourselves. We want proof that everything we put into him has developed his inner self. Then we want to know that person. It’s a gift to know your child, for your child to give you more than you gave. This life? This life, well, it’s more like living in an echo.

Noah calls himself “No-nah” or “No-no” depending on the day, but he cannot say his own name. Can you imagine? Eleven years, and you cannot say your own name. Nor has he been able to learn to say 3 words in a phrase that might shape a concept for us to grasp onto. If he has an imagination, I don’t know what he daydreams about. I don’t know if his stuffed animals have names other than “bear” or if he could parrot a conversation between two adults in that way of not understanding context that kids have. “Kids say the darndest things” and “out of the mouths of babes?” Oh well. Why long for something that can never be had?

Still. What would it be like to have a child who talked? A child who talked about nothing and everything? Whose brain, whose daily life, I could have some access to? That’s the hardest thing: to not ever know anything about this child beyond what I can witness. Sure, parents are all bystanders to our children’s lives, but what if he could give me access to his thoughts, his dreams? When he wakes up crying in the night, I do my best. I guess it was a nightmare. Or maybe he feels sick? But I can’t know. When he falls, I try to detect where he was hurt through trial and error–“Is it your foot? Your toe? Your leg?” while he points to his mouth which he obviously didn’t fall on–, but it would be that much easier if he told me what hurts. No, not easier, it would be…more like mothering to know what my child feels when he feels pain. Then I might know how to fix it.

People tell me I know my son better than anyone else. And while I suppose that’s true, it’s also the farthest thing from the truth. And very little comfort. I don’t know him, because much of what I know is what I tell myself, not what he tells me. Sure he can ask, “Why?” or say what sounds like “What job?” but might be “What’s that?” But it’s not like he can tell us a story about something that happened at school that day, and ask, “Why did that kid do that?” or “Why do they always serve Fruit Loops for breakfast?” or, “Why can’t Ms. H be my teacher forever?” The list goes on and on.

Can I understand what little he can say? Yes, a lot of the time. Certainly more than other people in his world, even those who love him best. I can reinterpret his utterances, his hand motions, his defiance. I can translate his few words into concepts others can grasp. When we are walking through the grocery store, and he points to a stock cart, and says “truck” in that way he does, and looks at the stockboy with a smile, I can explain, “He loves carts.” But when I think too much about it, about his inability to communicate with people other than me, the limits of how much he can explain, declare, ask, prevent, well, I go a little crazy. Someday he will be 50 years old and I will not be alive to translate for him. And who will protect him then?

It’s lonely for me to be with him, and I wonder if life is lonely for him too. I wonder if he has all these pent up words that he really wants to say, that would spill from his lips if his brain could speak to his mouth in a way that produces words. When I ask him how his day was, and he gives me the ‘thumbs down,’ I can’t know if he is thinking over his day at school and truly assessing it, or if he is only thinking about the last thing that has happened, or if he is being silly and saying that the day was bad when in actuality he doesn’t have the deductive or summary skills to know. So I guess in one way it is good that his brain is pretty limited in its cognitive ability too. Maybe he doesn’t wish to say more because his brain doesn’t really produce more that he desires to say.

But somehow I doubt that. Maybe he doesn’t have much to say, but I’m pretty sure that if his mouth and lips could form “I don’t want to go!” or “Can I have ice cream?” he would like that too. Even if he can never tell a story, I suspect he would like to tell a joke. And I suspect he would like to ask your name, say “Good morning,” ask for pink mittens. We introduce him to other methods of communication– ipad apps, sign language, push button ‘talkers’–, but he’s so singularly interested in speech, despite the struggles, that it is his default. He tries, we try, and all we can expect is to get somewhere close. There is no target beyond almost.

I’ve likened life with Noah to an unending game of Charades. That seems uncharitable, and of course minimizes the gravity. But maybe because I need it to. He produces sounds, and then it’s our turn to do the work. We offer him options and wait until we hit on one that makes him nod his head yes. And just like the game, we cheer when we guess correctly; we may even smack the sides of our head with an open hand, and say, “Oh duh,” because it has taken us so long to figure out he wants peanut butter, not butter, on his toast. And then Noah too echoes, “Oh duh,” and laughs at our stupidity, like he’s never expected us to understand him, like he’s any other child who thinks his parents are barely tolerably intelligent. And then, very likely, he will not eat the peanut butter toast, because that totally was not what he meant. But how were we to know? It’s a game we can simply never win.

Cosmogony

~ sehaldorson ~ 2 Comments

To see him lying there, bloated and nearly naked due to feverishness, tubes like exterior veins protruding out of his neck in a knot of grotesque jewelry, a patch of dark blood–had it gushed?–spread out and dried on his chest, a thrum thrust through my torso like when a plane breaks the sound barrier. He turned to me when I arrived, when I said, “Wow,” careful to keep a certain amount of lightness in my voice, like when you slip on the ice and fall hard but assure everyone concerned that you’re just fine, and he said, “I’m sorry, honey.”

I think at that point he probably knew it was bad since the machine those tubes attached him to was removing his blood, cleaning it, and returning it, in an effort to quickly reduce the number of white blood cells which had been replicating unchecked in his blood. A science teacher, a teacher of biology and chemistry, certainly he knew. But he is also a pragmatist with a healthy shot of optimism. In other words, he’ll face what he has to face, but he won’t think the worst until it’s absolutely proven to be happening. Then it’s a matter of science; luck hasn’t much to do with it.

The women from the blood center who worked the machine, who showed me the bags of his blood, both red and white, mentioned chemo to one another. I didn’t let on that I’d heard, but soon I went out into the hallway to find the hematologist and suggested they make an effort to talk to him about the chemo since he had not been told directly that he had anything that necessitated such treatment. I said all this without so much as a crack in my voice. She was unwilling to commit, to declare it was cancer, to say more than that they suspected a form of leukemia, because the lab results weren’t in yet. But she promised to have the resident stop by and explain what they’d learned as soon as she could track him down.

I went to his bedside, and asked if they’d told him they were going to start chemo, that it was likely leukemia. He said no. He stared up at the ceiling. Tears pooled in his eyes. And then they were gone. I told his parents when they arrived–they drove from Minnesota on a feeling that things were not all they appeared to be, parents who had already lost a son to cancer–, that it was likely leukemia. His mother shook her head, said it might not be, that the tests might reveal a less devastating diagnosis, but I was sure, just as I’d known there was something wrong with our son’s development before anyone else believed it could be true.

The resident explained to us what Acute Myeloid Leukemia was. He used simple pictures on a white board to illustrate what had happened in Mark’s body before we could know it was happening. My memory of these moments is solid–I see the room, his rough sketches, and hear the resident’s voice, a reassuring Indian sing-song, clearly–but I’ve turned the information around in my head so many times, trying to apply some sort of logic to the incredible, that I’m afraid each time I speak that I’m repeating some laughable interpretation of the facts like a game of telephone.

As I understand it, a chromosome went wrong and one rogue cell started birthing premature white blood cells which then replicated more premature white blood cells, ad infinitum, driving the platelets and red blood cells out of the neighborhood that was his bone marrow. And because immature cells can’t do the work that mature blood cells can, his immune system was an inadequate barrier against any kind of illness. The cause is a gene mutation, a mutinous enzyme, a scratch on the record, that caused his cellular production to go awry. If left untreated, the immature white blood cells would proliferate until he is dead. Because this new chromosomal error is uneditable, they must clean out his bone marrow and replace it with another person’s.

Some leukemia survivors regard their bone marrow transplant to be a rebirth. They take pictures of themselves celebrating their new birthday. Some report changes in their bodies–gluten intolerance, overly-sensitive skin, a lingering fatigue. Some make vague references to not feeling quite themselves. But I can’t help but fear, in a kind of wondrous disbelief that the best science fiction engenders, that the man I married, whom I have lived with for the past 20 years, will not, at the end of this odyssey, be the same. Is this the ultimate test of nature versus nurture? Creationism versus evolution?

Our son’s neurological disorder is undiagnosed. The closest we get is to say he has a seizure disorder, but there is no answer to the question: why him? There is no cause determined, no prognosis predicted. The geneticists and the neurologists and the epileptologists and the other specialists have looked at his test results, the scans of his brain, the vials of blood and spinal fluid, the space between his eyes, the shape of his fingernails, and found nothing to explain why he is as delayed as he is. Is he–are we?—just unlucky? Perhaps the world would be a friendlier place for him and for me if we had an explanation for the idiopathic symptoms that plague his development and his safety. Maybe we could put the questions to rest–Is it something I did?–but then what good has that done us in Mark’s case? Leukemia is something that makes sense to doctors; it is an affliction that has a rote protocol. But it doesn’t mean we don’t ask the same questions: why him? why us? what happened?

Life strikes. Bang. Mark’s cancer was like a car crash without the car. One day he was home, then the next he was beginning a month in the hospital, the start of a six month process toward getting cured, and maybe a two year process to become himself again. And yet, I took it in stride. Maybe it was shock. Maybe it was the Zoloft I’d been taking for a few years since my anxiety over my son’s health and special needs had turned into constant high wire walking. Maybe it was our son’s recent 3-week hospitalization over the previous Christmas and New Years that had prepared me for another long haul, another effort in compartmentalization, the practice of segmenting my strife from my life.

Because that’s what you do when you abruptly–is there any other way?–learn that your husband has cancer and treatment begins even before either of you has time to prepare. There was no choosing, no strategy, no warning that I would suddenly become a single parent of our special needs child, the primary money-earner, as well as the grateful, if begrudging, hostess to the constant stream of family members and friends and child caregivers and dog walkers and house cleaners who offered their assistance. Every one of the 25 days he was in the hospital, I kept it together. The gun had gone off, the race had begun, the ground moved beneath us, and we had no choice but to run, a marathon and a sprint both. Exertion and fear of stopping forward movement drove every decision, every action.

Most people picture The Big Bang as just that, a big bang. Like a spark and a flame that suddenly brought the universe into being. Energy makes sense. Flipping the lightswitch makes sense. But if the universe truly began not from a bang, but from intense pressure that literally pressed the world into being, then how? I suppose it’s why we look to God; the answers are so minor compared to the wonders of the world, the wonders of blood, the white and the red. One day, long before we knew Mark had cancer, something happened and suddenly? He had cancer.

And maybe there are times in a person’s life that are so combustible that you are fused into another version of yourself. My husband may earn a new life by accepting life from another person, but perhaps he already is becoming someone else. Perhaps it doesn’t take blood to renew the spirit. And perhaps it doesn’t take God either. Perhaps the extreme pressure he is under will change him regardless of the transplant, of the noncancerous cells recreating in his body minutes, days, weeks, and months after. And perhaps the same is true for myself. I wonder, after so much pressure, how much of my previous self is still there? How much of me is memory? And, maybe I wonder, how many times can a person be recreated before the pressure becomes smothering and the light just dies out.