We Didn't Have a Choice

When my little brother was six years old, he set our house on fire. While my sister, my mother and I were all inside it.

He found a discarded disposable cigarette lighter in a neighbor's yard. No fuel left in it, really, but it still sparked when he spun the little metal wheel with his thumb. It was the weekend, and my mother had been out earlier that day raking leaves in the back yard. She'd stacked several paper yard waste bags full of dry leaves against the back of the house, leaning up against the cedar siding.

We knew better than to leave my brother unsupervised, anywhere, for very long. But it only took a minute. Flick. Flick. Flick. Whoosh.

He stood and watched as the bags caught fire. He stood and watched as the flames licked up the cedar siding. He stood and watched as the entire back side of the house, with his family inside it, burst into flames.

My six-year-old brother was still standing there, watching, silent, when a neighbor who lived behind us happened to glance out his kitchen window, saw our house on fire, and ran outside, grabbed his garden hose, vaulted over our fence, and started screaming, "Do you know? Your house is on fire!"

And still my brother stood, seemingly unaffected, as our neighbor, and the fire department, saved our house.

This wasn't the first time my brother had started a dangerous fire. The first time, actually, he was only four years old. While my mother was taking a shower, and my sister and I were at school, he unlocked the child safety gate to the kitchen, pushed a chair up to the refrigerator, stacked two phone books on the chair, climbed on his makeshift stepping stool, and retrieved a can of charcoal lighter fluid from a high cabinet over the fridge. Then he went out to the front yard, doused a live oak tree (and, by accident, his own clothes) in the fluid, and used a discarded lighter (collecting discarded disposable lighters was a habit of his, you see), and lit the tree.

When my mother found him, the fireball had very slightly singed his eyebrows. But by some miracle, his lighter-fluid-soaked t-shirt, and the child inside it, were perfectly unharmed. 

As a young child, it seemed that my brother had no sense of danger, to himself, or to others. He was defiant, persistent, and angry. He hated being told what to do. He flung toys across rooms and broke them. He threw cats across the room, and hurt them. He climbed too high and jumped too far and pushed too hard and screamed too loud. He hit people. He bit people.

If you think this had anything to do with my mother's parenting skills, think again. She had raised me, after all — a straight-A student who showed proper manners at the dinner table, helped elderly neighbors shovel snow, cleaned her room (eventually) when asked, and never once earned a high school detention.

And keep in mind, she raised me when she was a struggling teenage mother. When my brother was born, she was 30, and much more financially stable. He was her third child. She was experienced at handling kids. She was one of those moms who could make rowdy neighbor kids shut up and stand up straight just by giving them a look.

And yet, she could not control my brother.

She took him to various specialists, of course. And while everyone could agree there was something Not Right With This Child, no one could agree on a diagnosis. Oppositional Defiant Disorder? Childhood Bi-Polar Disorder? Impulse Control Disorder? Autism Spectrum Disorder?

Child Sociopath?

The experts didn't know. We didn't know.

I'll admit it. We were afraid of him.

Was he really insane?

Would he seriously hurt someone?

We knew something was wrong. And we didn't know what it was. And we were afraid.

But we never, ever, ever, ever seriously thought, not even for a second, about giving him away. He was my mother's son. He was my brother. He was part of our family. He was permanent. He was ours.

And if there was something terribly wrong with him? Well, that was our problem to solve.

When he couldn't handle school, my mother homeschooled him. When she couldn't stop him from throwing rocks at neighbors' windows, she moved to the county, to a farm. When she caught him drinking beer and smoking well, well underage, she didn't kick him out of the house.

She kept trying. She just kept trying. She's his mother, after all.

She had no choice.

My brother is a teenager now. He's obsessed with Avatar, and Star Wars. He likes to play board games. He's an excellent reader, and wickedly smart. He has lots of friends. He's not always great about doing chores on time, but he helps my mother a lot, raising chickens and rabbits and horses on the farm. When my family came to visit last year, he insisted on carrying my mother's luggage out of the trunk of the car so she wouldn't have to lift it.

He goes hunting deer sometimes, with my stepfather. With a rifle.

Because he's the kind of kid you can actually trust with a gun.

He wants to be an auto mechanic, or maybe a construction foreman, or maybe an electrical engineer. Some job where he can use power tools and build things with his hands. (And yes, maybe occasionally set something on fire.)

He's a really awesome kid, my little brother.

* * *

I did everything right during my pregnancy. I stopped drinking alcohol the day I saw the plus sign on the test stick. And not only that — I cut out caffeine. Entirely. I cut out soft cheese and bean sprouts and sushi. I didn't smoke. I didn't even hang out around smokers. I ate a very carefully balanced diet.

I exercised. I made my husband change the cat litter. I avoided gasoline fumes. I read seven different reference books on how to have a healthy pregnancy and delivery. I arrived at every OB-GYN checkup ten minutes early.

Apparently, none of that mattered a whit when it came to the small tumor that formed on my son's skull while he was still in my ridiculously healthy womb.

* * *

My son didn't sleep through the night on a regular basis until he was two years old. From the time he was a newborn, until the time he was about eight or nine months old, he actually never slept more than three hours together at a time, and some nights, he would wake up just about every hour.

Which meant that I had to wake up, every hour.
 
By the fifth month or so of this I was such an exhausted mess that I stared to hallucinate, sometimes. I'd see weird shadows morph into monsters at the corners of my eyes. It was not good. I knew it was dangerous. What if I fell asleep sometime, holding him? What if I dropped him?

But what could I do?

I tried everything to get him to sleep. Co-sleeping. Not co-sleeping. Gentle training. Gradual sleep training.  Ferber. It didn't matter. Nothing worked. If I tried to leave him alone in his crib when he woke up at night, he would just cry more and more loudly, until his cry turned into bloodcurdling screams, and he would hyperventilate until I thought he might vomit.

Whenever I turned on the vacuum cleaner, or the food processor, or a power screwdriver, or anything else that made a certain pitch of whrrrrr, my son used to widen his eyes, arch his back, turn bright red, and scream as though he were being flayed alive. Even after I turned off the offending machine, he would shudder and whimper for several minutes afterward. Like the noise had horribly, physically hurt him.

My floors got very dirty.

As a toddler, whenever people sang or clapped in unison, my son used to cry and shiver like he'd just seen a ghost. I found it necessary for us to excuse ourselves from the singing portions of birthday parties. We could not take him to church services or weddings or children's events involving clapping or singing, or even restaurants where people might sing, without risking a meltdown.

Until the age of three my son could not stand blankets. As an infant, whenever I would try to nurse him under a blanket, he would tear it off. If I put it back on again, he would cry or stop eating. If I kept on trying to cover him, he would bite me.

At night, he would not sleep under a blanket no matter how cold it was.  I could only sneak blankets on him after he was already sleeping.

Which was easy enough to do during the two years I almost never slept. 

All of these problems paled, of course, in comparison to the eating issues. After the surgery to remove his tumor, he stopped eating. He was terrified of trying new foods. He would spit and gag and act like he was choking on a spoonful of soft stewed peas. There were some days when I spent hours and hours just trying to get him to take a single bite of a single cracker.

I spent thousands of dollars taking him to doctors. An endocrinologist, a gastroenterologist, a food allergist, a nutritionist. I didn't care how much it cost. I just wanted them to fix him.

At his thinnest, you could see every rib and every knob of his spine, and legs were like sticks and his belly curved inward. Like a starving child in a public service poster. Every time I changed his clothes, I fought back tears.

There were so many times when I thought "Why me?" or "I didn't expect this. I didn't ask for this." There were times, especially late, late times during yet another night of too little sleep, when I fantasized about running away.

But did I ever think, really, about giving him away? Hell no. He was my child. His problems were my problems. I would fix them or I would die trying.

I had no choice.

* * *

So forgive me if I cannot understand this:

How can a parent who has a adopted a child who has turned out to have special needs feel that she has a choice about whether or not to continue to care for that child?

How does one justify returning a child like a piece of defective or mislabled merchandise?

"I'm sorry. This box said PERFECT FAMILY ADDITION! on the label. There was nothing, nothing at all in the ingredient list about EXTREME SEPARATION ANXIETY or DEVELOPMENTAL DELAYS or EXPLOSIVE ANGER. I demand you make this right!"

The very idea of someone returning a child they have chosen because that child turned out to be difficult to parent makes me so angry I shake.

Do not, for a moment, misunderstand me.

I understand how it feels to be told you're about to have one kind of change in your life, only to realize you are faced with something entirely other. I understand how headbashingly difficult parenting a child with special needs can be. I understand how utterly terrifying lifeshakingly hard it can feel when you realize that instead of that nice trip to Italy you planned, you just got a one-way ticket to Holland. Or Swaziland. Or, hell. Antarctica.   

I've seen families torn apart by the strain of raising children with serious health or mental problems. I've seen happy couples get divorced. Healthy children get neglected or hurt. I've seen people lose jobs, homes, dreams. Years of their lives.

I've stood in a house that was set on fire. 

I understand feeling desperate. I understand feeling scared. I understand feeling like you just can't live this way anymore. Like it's not fair. Like you shouldn't have to face this. Like you're going crazy. Like you're at the end of your rope.

What I cannot understand — what I do not think I, as the mother of a child with special needs, will ever understand — is how you can feel that you have a choice about being a parent to a child you have already chosen and claimed as your own.

Those of us who choose to bring children into our lives through our own wombs do not get to totally abdicate responsibility for those children just because they, at some point, turn out to be less healthy than we hoped for or expected.

I when I was going into labor, I didn't get to check a box on some form saying "Not willing to give birth to a child with special needs."

It was my choice to have a child.

I didn't have a choice about having a child with special needs.

It just happened that way. 

No matter how you become a parent, you cannot, ever, fully control how your life with your child will turn out. Every child will have problems. Every child will cost money you don't have. Every child will exhaust and hurt you and make you secretly dream, at some point, about running away. And some children will make you have that dream more often than others. 

But the point of being a real parent (no matter whether your child was born into your arms or crossed an ocean to come home to you) is that, no matter how hard it gets, no matter how tired you are, no matter how much help you have to ask for, you don't abandon a sick, hurting child who needs you.

Real parents don't allow themselves that choice.