I remember walking up the stairs to Robert’s apartment, determined to end the hateful stalemate that was immoveable, static, a mountain or a moon, and I walked up the stairs trembling and I would end it. I would end it if I died.
I remember most of it like snapshots, the way you remember things that happened when you were a very small child.
I remember the police walking up to our door, and why? Could it have been just because my daughter Abbie was at my house and her dad, Robert, was angry about that? It seems unreasonable, but then everything was unreasonable.
I remember opening the door to them, the way they stood back, one on each side of the door, hands hovering over their holstered guns. One officer asked, “Do you have any weapons?” and I answered, “We’re Mennonite,” a ridiculous answer for what felt like a ridiculous question.
I remember my stepson taking his little brother into his room, trying to protect him from seeing police in the house, and is that a memory, or is it a hope? The police said we may not close any doors, and that may be invention, too. I was underwater, breath held, heart paused, and one officer asked Abbie, “Are you OK to be here? Are you safe here?” and she glared (did she?) over his shoulder and said yes, yes, she was safe, she was fine, and they asked to see papers. They wanted to look at papers with signatures and official seals: is she mine? Is this girl flesh of my flesh? Is she my heart, my soul, my waking and dreaming life and all the hopes and heartaches I have lived? Did a judge, a lawyer, some official person declare her to be so?
Many days or weeks before, but maybe after, I called my son Jacob. It was December, his 18th birthday. “I never have to see you again, Mom. I’m never going to talk to you again. I don’t have to anymore and you can’t make me,” and the world was flat and I was flat and you were flat, too, and the phone burned to dust and someone was there, but who? Who was there? Someone held the parts together because the parts stay together and life goes and we are not flat, except we are. We are flat and so very, very sad.
Later, but not much later because I was leaning against the window in my bedroom and the window was very cold, and I rested my forehead against it and felt the coldness and the coldness kept me tethered to the flat, flat world, and Jacob was on the phone, in my ear, and his voice came out to me but it was carrying his father’s words. I don’t know most of the words anymore. I heard them 1,000, or 10,000, or maybe 1,000,000 times, if you count how often I heard them while I slept and when I made dinner and while I drove, but I don’t remember all of them. I heard them on a little silver flip-phone, and over a Palm Centro, and on a Droid X, and on a Samsung Note and occasionally even face to face. I heard them and they stabbed me all over, each one a tiny piercing needle and I cried until I was a husk of corn, stripped, withered, ugly. Wasted. Useless.
I remember walking up the stairs to Robert’s apartment, determined to end the hateful stalemate that was immoveable, static, a mountain or a moon, and I walked up the stairs trembling and I would end it. I would end it if I died. I would end it if he killed me. I hoped he would kill me. I hoped he would kill me 9 times and burn me down, flat me on the flat earth in the emptiness of life without them. I would die, I would hurt and I would die and it would be so right, so holy, a most perfect thing. I would not live without them anymore. I would not look outside to see some official person with a weapon or a clipboard come to decide about me. I would not watch for the cars with the official seals on them because he hoped I would lose not just the two children we shared, but my other children as well. I would not cry myself to sleep Jacob Abbie I want you I miss you life is empty everything hurts come home come home come home to me I love you so much and I’m flat and everything is burning and still I go to the grocery and pay the gas bill and watch cartoons with your brothers and where is the ground? Why does it buck and curl under my feet this way? I can’t love you this way. I can’t. I can’t. I’m flat. We’re all so flat; there’s nothing but the hate he cultivated and the hate has made us all flat.
I remember hearing my husband murmur to our youngest son, “Stay here with me. Mommy has to cry for awhile, but she’ll be OK,” and our little boy’s voice, angry, asking, “Why are they so mean? Why don’t they come back? Don’t they love us?” and I covered my head with pillows.
I remember walking up those apartment stairs the most. Crumbling concrete stairs, itchy gray wool socks on my feet, and a mild Albuquerque winter day, and I knocked on the door. Robert came to the door and I was ready. I would push my way in, force an end, stop the stalemate and surely one of us would die or sleep that night in a jail cell, but I would end it. I would breech this unbreechable thing with a broken jaw or a pair of handcuffs. Finally, I would see it through to the end.
All those times when he sent official people to my door: nod, nod, no sir, no weapons, yes ma’am, we have food in the kitchen, see? No sir, we don’t spank, yes ma’am we have a pediatrician. We are good, do you have that in your official papers? I am their mother, do you see here where the judge signed? Do you see where some official person with an important title said that these are people I have permission to love? Do you see this seal? This date stamp? This envelope, this name, this signature? I have no weapons, nothing useful except this phone, this hateful phone and these ears to hear and these eyes to see and my regret to keep me awake at night.
But the memories. I remember opening the door, so many times. I remember answering the phone. I remember mistakes, recriminations, allegations, and the cold, cold window against my forehead, and the world dark on the other side, and darkness is a cannibal and hate is a ravenous monster and they ate connection, cohesion, coherence, and left me with these snapshots. I moved the mountain. I breeched the unbreechable, and when I celebrate, I also cry, and I am more whole and more broken, both. I read and sleep and walk and wish that Robert could hurt, and pray to forgive. Forgive him, forgive them, forgive the nameless others, forgive me.
You have a baby, and everybody tells you, “Enjoy it; it goes so fast!” and you’re enjoying it, but you’re also living the day-to-day blur of diapers, sippy cups, lullabies, preschool decisions, homework help, and curfew arguments, and then one day you realize that all those people were right. It goes so fast. Faster than you could have imagined.
But it’s not sad. Sure, it’s a little bittersweet, because once upon a time this girl, my Abbie, was milk-drunk and heavy in my arms. She was a flurry of opinions, a blizzard of words, a soft request for me to rock her, to read her a book while she went to sleep. She was a halo of ginger curls over wildly pumping legs when she ran to meet me at the end of her preschool day. But it’s not sad because Abbie is still Abbie.
She’s 18 today. 18! It’s been a long time since she asked me to rock her to sleep and those ginger curls submit to the application of chemicals and appliances, but she is herself. She could never be anyone but herself, and she is extraordinary.
I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?
Sometimes, I get frozen.
Actually, scratch that. Often, I am frozen. I live long stretches of my life like a deer hypnotized by headlights and it’s infuriating and frustrating and as an excuse to hate myself, it’s powerful. As a good slippery place from which to descend into depression, it’s very effective, except neither self-hate nor depression is my goal.
Let’s say I just dropped Carter off at school or a play date. I come in from the garage, let the dogs out, and pour myself a cup of coffee. I’m good with all that but now it gets sticky because I need to make a decision: what should I do next? I haven’t posted to my blog in days or weeks and I want to write something, and I’m feeling some pressure because I hate that I don’t post more regularly. There’s a proposal for a column that I need to finish and I’m angry at myself because it’s an awesome idea, plus I need to make some money. There are submissions for my church’s literary magazine to be read. There’s a book for which I’ve promised a review and have only read half, a long list of emails to answer, and don’t forget my book, with its stacks of notes and half-finished chapters gathering virtual dust in their electronic folders! That’s maybe one-third of what beckons me from my office, but I assume you get the idea. It’s a mash of things, most of them fulfilling and interesting, but there is also some sense of…not exactly obligation, but my life is not as good when I don’t do these things. I am my best self in the office, when I am creating and exploring, but I also struggle in there.
I sit down at my desk and adjust my chair, put on some music, light a candle, open all the necessary tabs on my browser and…crap. The few words I’ve produced are awful. I’m feeling a little guilty because Carter wore dirty socks this morning, so maybe I should tackle the laundry. I get up and carry my coffee cup through the kitchen (need to clean! need to shop! try to ignore!) and down the hall. The green hamper outside the hall bathroom is so full, clothes and sheets and towels are poking through the little holes and things are spilling over the top. How this hamper is so full is mysterious since Carter’s room looks like a textile-factory explosion. I kick my way through the clothes so I can open the window because it doesn’t smell very nice in there.
To heck with this, I think. I’m not picking up Carter’s clothes. He can do that himself when he gets home from school. I’ll start with Brian’s and my laundry, and I head to my room.
Where I am hit over the head with the fact that my little red-headed apple didn’t fall far from this tree because every pair of socks I have worn in the past week is on the floor on my side of the bed. The bedroom hamper is no more than 5 feet from the foot of the bed (more like 4 feet, what with the over-spillage), yet I pull off my socks before I get in the bed every night and leave them on the floor. Here are more coffee cups (there are matching groups of cups on my desk and on the table next to my favorite chair in the living room), plus water glasses and a towering stack of books that belies the fact that I switched to e-readers years ago and much prefer them.
I sit down on the bed and clear a little spot on the nightstand for my coffee cup. I’ll just sort the laundry. I’ll start with that, and I’ll feel a little better. A little more in control. I get up to gather laundry baskets and discover that two of them are in my Abbie’s room, full of clean laundry she hasn’t put away yet. One is in the laundry room, full of soggy towels from Saturday when Brian gave the dogs their baths. Also, Spencer’s clothes are in the dryer and there is a load of sheets in the washer that smell musty because I ran them two days ago. I look around at the drifts of dog hair in the laundry room (which is also the dog’s “bedroom”) and decide I need to sit down and have another cup of coffee.
It all seems too much, too big, and the chatter in my head is unbearable. My folks, my sister, my ex-husband, my 10th grade English teacher, the psychiatrist I saw when I was 19, some therapists, a pastor from childhood, occasionally even my kids, all their voices bundled, amplified, and heavily distorted by my shame (except the voices of my sister and my ex-husband who would say my worst assessments of myself don’t go far enough). Except it’s all my voice. Sometimes I can drown them all out with an audiobook or loud music and actually get something done. Other times, I can’t get above the struggle. The voices are deafening and exhausting and I’m overwhelmed with guilt because I am wasting my day, my talent, or my life (Welcome to my ego; is it not an unlovely thing?).
I stir like this all day, almost every day. I feel like I’m witnessing a fight-to-the-death between my brain’s ability to focus, organize, and execute, and my life. I keep us functioning at an acceptable level: there is food in the refrigerator, clean clothes in the closets, bills paid on time(ish), and everyone gets to their appointments on time. I meet my obligations at church and in the other organizations I’m part of and I never miss a hard deadline (though the soft ones and the ones I set for myself are symbolic at best), but the rest of it is a relentless battle, and life is not what it could be. I don’t have energy for relationships, creativity, and fun because I’m exhausted from this internal fight.
But dammit, the noise! If I shut down and shut it all out (books, Netflix, web surfing), I can get a little peace but I don’t get anything done, don’t even really live my life. When I try to accomplish something, the nattering begins. I’m not good enough; why didn’t I do this sooner; who do I think I am. If I wash the window sill above the kitchen sink, I notice the horrifying state of the front yard, and if I dust the window sills in the living room, I notice the horrifying state of the backyard. Carter needs his fingernails trimmed, we’re out of milk, I told a friend I’d write a piece for her new website, on and on and on and I am tired. I’ve read the books, taken the medicine, talked to the therapists, done the programs and I’m just…stuck. How did this happen, when I love my life? It’s a hard life sometimes, sure, but it’s good. It’s very, very good, so why am I not living, creating, and enjoying?
I believe there’s a solution, but all I really know so far is this: being hard on myself is not that solution. I’ve done that and it does not work. What I haven’t done is share the struggle publicly so let’s see where that gets me. Maybe you’ve experienced the same thing and I’m not all alone in the world. Stranger things have happened.
I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.
I have yet to meet a parent of a child with disabilities who hasn’t heard a whole lot of nonsense from people who never intended to speak nonsense.
I’m not speaking here of the jerks, the people who say things intended to be mean. Those people are heartless and lost and bummer for them because how sad, to live in a world that has so little kindness in it. I’m talking about ordinary people, the well-meaning man at the grocery store, the group of friendly acquaintances at church, and even the best friends who, when face-to-face with the parent of a child with disabilities, don’t know what to say.
If I sound at all bitter anywhere here, I apologize. I have no high-horse on which I may stand. I said some of these things before I became a parent of a child with disabilities.
Any bitterness that comes through is only a result of the incomplete job I have done so far in letting go of the anger and disappointment that engulfed me in Carter’s early years. If someone had told me these things before I had Carter, I would have tried very hard to listen and learn, and I know that when I said these things I meant no harm. In fact, I believed I was helping.
With those caveats in mind, here is a long list of things we parents of kids with mental/emotional/social issues hear often and that hurt us, and a much shorter list of things that I wish I had heard back in the years when life was all crisis, all the time.
What you said: God never gives us more than we can handle.
What we heard: You’re fine. Quit whining.
We’re not fine. Also, it is very dangerous to bring God into conversation with a person whose faith you don’t know intimately (and sometimes even then). We bring God to these conversations by bringing kindness. We bring God by seeing, hearing, and connecting.
What you said: He seems fine to me! Or, All kids do that!
What we heard: You are a very dramatic person and you should get over yourself. Also, you are very likely a huge liar.
If you said this to me now, I would raise my left eyebrow to you and make a mental note never to discuss anything related to Carter again. Back when I was in agony pretty much all the time, it was like being punched in the guts. It didn’t help that I heard it often. Carter was occasionally distracted from his incessant wailing by new surroundings, new faces, and especially fluorescent lighting. Plus, I rarely left the house unless he was at his best, so people heard my descriptions of a baby who cried hours and hours on end while said baby looked around from his perch in the sling in which I wore him.
Here is a good rule for all of us when we are talking to a person in pain: do not contradict. Even if the person you’re talking to seems to be completely full of crap, acknowledge the pain. See the person in front of you, because the person matters infinitely more than the facts, and this isn’t a courtroom. Even if I had been radically exaggerating the extent of Carter’s crying, I was in pain. Even if, as he got older, I was wildly overstating the rages, the migraines, the constipation, the sleep disorder, and the despondency of his depressions, my pain was real.
What you said: You must be a very special parent for God to give you such a special child.
What we heard: We are fundamentally different. I’m not even going to try to understand you.
When I first heard this, I would imagine God sitting at a school desk with a paper in front of him, just like the worksheets we used to get when we were in elementary school. There would be a list of babies on the left and a list of parents on the right. God would draw a line from the most difficult baby to the strongest parent, then second most difficult to second strongest, etc. In my imagination, a dog (God loves dogs) comes bounding into the misty, ephemeral scene, distracts God, and oops! God sent the wrong baby to those wacky Joneses!
There was an accident, and the accident broke Carter’s brain. I don’t know why, but I know I’m not special, and I need you to see and hear me and my struggle.
What you said: You are an angel! I could never do what you’re doing.
What we heard: Hey, sounds tough. What a bummer. It’s a good thing you can totally handle it and you don’t need anything from me!
Yes, you could handle it. The alternative is…what? It’s your kid. You handle it. Not with any grace or style (no points for those things, anyhow), but you just do. Ordinary you, ordinary me.
We aren’t different, we parents of special needs kids. I promise I’m just like you. I kick ass at some parts of parenting, and I’m lousy at other parts, and I’m very ordinary at most of it. You’d be horrified if you heard a group of parents of kids with issues like Carter’s talking amongst ourselves; we use gallows humor and and talk in ways we know would alienate you, and we are very un-angel-like. We are deeply angry sometimes. Wounded. Broken.
But if you come to us and say, hey, I’m in trouble, I have a kid with problems and I think I belong in your club, we will gather you into our circle so fast you won’t quite know what hit you. We will listen to you cry and we won’t tell you to stop. We won’t tell you to be strong because we know you are being exactly as strong as you can be. We know that your need is deep and that you can’t handle this, even as you are in the midst of handling it.
What you said: Every child is a blessing.
What we heard: Suck it up, buttercup!
First, duh! Of course my child is a blessing. I love him like fire. That does not invalidate my pain. In fact, my love is causing my pain because if I didn’t love him, why would I even care?
This is the Italy/Holland/Sudan problem. In 1987, Emily Perl Kingsley wrote an essay (which every parent of a child with disabilities is contractually obligated to receive in his or her inbox a minimum of 40 times in the year following initial diagnosis) comparing having a child to taking a trip to Italy. You’re planning this lovely vacation in Italy, and if your child has disabilities, it’s like accidentally going to Holland, and it’s very different and you’re disappointed, but hooray! It turns out Holland is fabulous!
Our plane landed in Sudan, and Carter and my husband and our other children and I are dodging bullets, rapists, and starvation, praying to escape with our lives. Windmills and tulips and charming sidewalk cafes sound damn good from here. I don’t owe it to anybody to put a smile on my face and pretend my blessings are different, but just as wonderful. Yes, there are some things about Carter’s illness that have made me a better person, but I would trade it all in an instant if it meant that Carter could have his brain intact and my other children could have had a childhood that didn’t include all the crises that their brother brought with him into the world.
What you said: Your faith will get your through! Or, God doesn’t bring us to it unless he plans to bring us through it! Or, With God all things are possible!
What we heard: You’re only having trouble because your faith is crappy and weak.
Here’s the deal: my faith did get me through, or rather, God did. I was more broken by the time Carter had his second birthday than I have ever revealed publicly, and I spent long, wakeful nights in the manner that is familiar to millions of people of faith: on my knees, the holy book of my tradition open in front of me, begging God for relief for me and my family and healing for my child. I told God that if we couldn’t have relief and healing, that I would very much like a carbon monoxide leak to take us all quietly in our sleep, and if that could be arranged while Jacob and Abbie were at their dad’s and Spencer was with his mom, then that would be infinitely preferable.
I am 90% convinced that if the house we lived in at that time had a garage, I wouldn’t be writing this to you now. The presence of God in the universe doesn’t let people of faith off the hook and platitudes like this don’t help anyone except the person who says them. Glib sayings about faith are all well and good when life is swell and the sun is shining. People who are suffering need something more substantial. If you are a person of faith, we need you to live that faith by caring for us and hearing how we’re struggling.
What you asked: Did you take medicine while you were pregnant?
What we heard: How did you cause this?
This was a question someone asked me while Carter was a toddler, screaming and fretting through his second year of life. What I know now is, when people ask me questions designed to figure out how I caused Carter’s various disabilities and issues, they are really saying, this would never happen to me. And while I want to reassure you that it probably won’t happen to you, it could. Yes, you. You, who give money to charity and always wear your seatbelt and feed your family organic foods and are a very nice person who never kicked a puppy. I know that it is very, very painful to live in a world of uncertainty and fear because I live on a cliff every minute, but there are no guarantees in this life. We don’t have (will never have) answers to questions like why this child? Why our family? There are no answers to those questions, or at least none to which we have access during this lifetime.
There are dozens of variations of this question, all of them probing for a cause, seeking to lay blame on the feet of that traditional whipping post, dear old mom. When he was a baby, my friends who practiced natural and attachment parenting thought I wasn’t doing natural and attachment parenting hard enough (A baby whose needs are met won’t cry! Pfffffffft. Suck it, Dr. Sears.). My friends who practiced more conventional parenting thought I was spoiling Carter by nursing and carrying him so much. No matter which way I turned, someone assumed it was my fault, as if I wasn’t already trapped in a giant web of self-doubt and recrimination. I tried to give him away to foster care (Thank God Brian stopped me because I really do love that kid.) because I was sure he needed a better mother.
As he got older, people gave me books about discipline and my father-in-law offered to take Carter for two weeks to make him shape up. Do not succumb to this temptation. Ordinary, fallible parents do not cause serious disabilities in their children. We have not traumatized them into their problems by being human. Resist the impulse to make assumptions about a child’s parents based on that child’s behavior.
The world is uncertain and sometimes horrible, even here in middle class America where the grocery stores overflow with food and the roads are paved and talk radio churns its way ever forward. Crappy things happen to perfectly ordinary people, and most of the time there is no one and nothing to blame. It’s lousy and it feels horribly unfair; nevertheless, it’s the truth.
One note underlies all of these statements, and it is this: Please be quiet. You don’t mean to say that, but platitudes are conversation stoppers, and when we hear them, we hear you begging us, please don’t show me this anguish because I can’t bear it. I don’t know what to do and if you would be quiet I would be much more comfortable. I’m telling you this because I think most people don’t want to be saying that, but what is there to do? A friend (or family member, or acquaintance, or stranger) is in pain, and what am I to do? I don’t understand this. It’s scary. It’s weird. It’s so other you might as well be beaming me a message from Planet Zergon.
I’m going to tell you. Here is your map.
Listen. Just listen. Open yourself up. Yes, it hurts and it’s very scary. That’s OK. There is a person in front of you who is in pain. Don’t leave her alone with it.
Know that you can’t fix it. Don’t try. We have doctors and therapists and other professionals for treatment. Also, that diet/book/supplement you heard about that can cure all the problems? We’ve heard of it already. We’re on the internet while you sleep, and anyway, 26 of our Facebook friends already sent us the link.
Acknowledge and affirm. Say, wow, that sounds hard. Say, oh, my God, how painful! Say, I hate that it’s so difficult for you.
Treat our kids the same way you treat other children in your life. Of course you should be sensitive, especially with kids who have emotional/social/behavioral issues, because many of them don’t want to be touched or may not be verbal, but in general, if you usually engage kids in conversation, do that with our kids too. Say hello. Smile. They might not respond predictably, if they respond at all, but they see you.
Offer to help, but only if you mean it (people in pain are sensitive; we know when you’re saying words you don’t mean so you can feel good about yourself). My mom sometimes came to my house and gathered all my laundry baskets and every scrap of dirty laundry in the house (which completely filled the trunk of her car) and brought it all back a day or two later, clean and folded. Our friends from church occasionally brought us meals. A friend drove Carter and me to some of his appointments during the worst months because I didn’t feel safe driving alone with him. Those things meant the world to me. As much as I appreciated the clean clothes, meals, and rides, I was even more grateful to feel a little less alone in the world.
Send a note, a text, or an email. Parenting a child with special needs can be profoundly lonely. It’s also hectic and chaotic and we may not respond to you, but do it anyway. The world starts to feel very far away when life is all appointments, crisis, chaos, and praying for survival. Stay connected, even if it feels one-sided.
If you’re very close, spend a little time learning about your friend’s child’s diagnosis. There is no need to become an expert, but an evening spent learning will only make you a better listener. If you don’t know what to read, your friend will gladly tell you.
Keep listening. Just show up and listen. There’s nothing any person in pain needs more.