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.
Jacob called me on a Friday morning a few weeks ago and asked, “Hey Mom, can you come pick me up at Job Corps? Like, now?”
Job Corps, where Jacob has been living and studying for the past year, is a federally funded education and training program for people ages 16-24. Students earn a high school diploma or GED and train for a career, all at no cost to the students or their families. It’s a great program for lots of reasons, and I’m sure it works for different students in different ways, but for Jacob it’s been perfect because he needed some independence from his family but he wasn’t ready to be on his own. Job Corps provided a bridge between family dependence and independence.
I drove across town to pick him up, and there I found a sturdy, confident young man surrounded by luggage and wearing a hardhat and tool belt.
In his backpack, he was carrying his diploma, the verification of one of the many things he has accomplished in the past year.
Once upon a time, when I was not much older than Jacob is now, I wanted to have a baby, and that baby has taught me more about myself and this world and God than almost any other person on this planet.
I learned early on that there are almost no joys in life so great as seeing one’s child feel proud of himself for an accomplishment that has been hard-earned, and Jacob has had much to be proud of, being born as he was with a tremendous will to conquer. When he was two, he decided that he would learn to turn a perfect somersault, and he did nothing but turn somersaults for two days until he could do them with ease. Likewise, when he thought it was time to learn to ride a bike, he ignored banged-up knees and scraped palms and tried, tried, tried with determination until he rode without a wobble.
When we went for our tour of Job Corps and one of the teachers told the gathered group of potential students, “We’ll try to help you every way we can, but lots of kids don’t finish the program,” Jacob leaned over and whispered in my ear, “I’ll finish, Mom.” And I knew he would. I never had any doubt.
Once upon a time, I wanted to have a baby, but what happened instead was that there was this whole, extraordinary person. Congratulations, Jacob. I hope you’re so proud you bust your buttons. I hope, too, that you know that even though you’re a man now, I’ll still sing the humming song to you whenever you want.
Since I appeared on The Ricki Lake Show: Inside Childhood Mental Illness last Wednesday I have heard from dozens of parents. Most say some variation of “Thank you for sharing your story. It makes me feel less alone.” Some are pleas for help finding appropriate services (How painful, not to have an answer, but I am just a mom with a blog, not an agency.), and quite a few say something like, “I know I shouldn’t feel this way, but……” followed by an outpouring of fear, anger, rage, hate, despondency, terror, helplessness, hopelessness, and regret.
I have tried to answer every one, but I got a little lost somewhere among Facebook, Twitter, blog comments, and email, not to mention the comments on the show’s website, FB page, and Twitter feeds, but I’m answering all the people who write, think, and say, “I shouldn’t feel this way!” with the following commandment:
Give yourself a break.
There is no way that any of us should or should not feel. We get enough judgmental crap from family, friends, and that guy in line at the post office. We don’t need to do it to ourselves. Let’s start with some truth: having a child with a serious illness sucks. It sucks giant, hairy, unwashed monkey ass. Yes, there are blessings. Yes, some of the consequences are lovely.
We will see the blessings and the loveliness when we are good and ready and not one instant sooner. Do you know to whom we owe a sunshiny, rosy view of things?
Not one person, anywhere, ever.
Here’s the thing: the first step to learning to live with all those painful feelings is to stop condemning ourselves for having them.
Feelings are not like actions. Our actions are up for debate. If I punch someone in the nose, or drop my drawers in the middle of a restaurant, or drive my car too fast, or starve my kids, people (perhaps represented by law enforcement) have every right to say hey, cut it out! That’s not OK. We don’t accept your behavior.
Feelings, though, belong to the feeler, and they are never good or bad, right or wrong. Some of them are wonderful to experience and some of them are like being ground to bits, but they are morally neutral.
When Carter was a baby, I was consumed with guilt over the fact that I had enjoyed my other babies so much more. I believed that I loved my other children more than I loved Carter. Dozens of people have written to me in the past few days expressing similar anguish over loving other children more than their ill children, or not loving their ill children as much as they believe they should. We wring our hands and ask over and over, “Do I love him/her enough? How can I love one more than the other? Am I not supposed to love my child unconditionally? I must love this one as much/enough/more! I must! I am a failure as a parent and a human!”
Could someone please show me the cosmic measuring stick of love?
There is no love measurement. Remember where we started: having a child with a serious illness sucks. Here’s another truth: having a child with a serious illness that causes that child to act mean/vicious/violent/cruel/aggressive, or prevents us from taking care of our own basic needs (sleep, cleanliness, food, exercise, socialization) sucks ultra-triple-super-extreme.
Another truth: when someone is being mean/vicious/violent/cruel/aggressive to one or more of our children, we will have a protective reaction, even if the person being mean/vicious/violent/cruel/aggressive is another of our own children. That makes those feelings of love and kindness really difficult, if not temporarily impossible.
When we are restraining children who hiss and spit and bite like angry cats, and our hearts are thundering like trains and we ball up our fists and press them tight so we do not punch and we clench our teeth so that we do not bite, that is love. It doesn’t feel like love. It feels like raging helplessness. Nevertheless, that’s love (with teeth), and it’s the same love we feel when we enjoy ice cream sundaes with smiling children who tell adorably bad jokes.
Love is only sometimes about warm, happy feelings. Every parent learns this lesson eventually (by puberty at the latest), but we must learn it earlier, faster, deeper, and more violently.
Another truth: humans have emotional limits. If you’ve ever watched someone near the end of a long race hit the wall, you know the human body can come to the end of its endurance. What most people don’t know is that we can hit an emotional wall, too. None of us has a bottomless well of compassion, empathy, and kindness to share. Not even parents. Not even the mothers of special needs children, who, in spite of popular myths about saintliness, great strength, and an abundance of patience, are utterly ordinary.
Self-flagellation is not the cure for that misery. I promise you, with all the confidence of 19+ years of parenting and more practice in brutal remorse than anyone I know, that there is no problem so great that self-flagellation cannot make it worse.
The outrageous and surprising irony is that, once I gave up on trying to see the bright side and looking for the silver lining and other assorted nonsense and admitted to myself that having a kid with serious mental illness sucks, and I hate it, and I would trade it in red-hot instant? That’s when I started to come to some kind of tentative peace with the whole mess.
And it’s a mess. Oh, yes, no mistake, we are not on some alternate-but-just-as-lovely-in-its-own-way life path over here.
Do you know who needs me to see Carter’s illness and the fallout it has created in our lives as an alternate-but-just-as-lovely-in-its-own-way life path? A whole lot of people who don’t matter; people who don’t get it; but the fact is, I can love Carter wholly and completely and also feel bitterly angry at what his illness has brought into my life and my family.
The more fully I accept that anger, the more often I feel the love.
What happened to Carter is flat lousy. I don’t help myself or anyone else when I pretend otherwise. I say again:
Give yourself a break.
What you feel is what you feel. It’s all OK.
All that said, sometimes our feelings get the best of us and we do things that are destructive and hurt us, our children, or others. If you need help or support, please ask. (All these resources are in the US.)
If you feel that your health and safety, or that of your child (or anyone else), is in danger, or that you or your child (or anyone else) may hurt someone, call 911 or go to the nearest emergency room.
If you want to talk to other parents who are raising children who have special needs and you’re on Facebook, send a join request here.
Real happiness is nothing like what we see on TV. That happiness comes from big houses and children who go to Ivy League colleges and beautiful dresses that drape gracefully over slender hips. For me, it is some mysterious combination of praying, serving, loving people, and creativity.
I was diagnosed with major depressive disorder when I was 18, and even at that early age the diagnosis had been a long time coming. Near as I can remember (and depression + many years have done their work on my memory), I had my first serious episode of depression when I was 8 or 9 and by the time I started middle school I was dysthymic (mildly depressed) most of the time with 2-3 episodes of major depression every year.
After I was diagnosed I saw a psychiatrist, Dr A, for about a year. This was back in the olden days when psychiatrists did therapy, so in addition to handing me a monthly slip of paper that I exchanged at the pharmacy for a tiny bottle of green and white pills (Prozac was the only SSRI on the market at that time), Dr A and I therapized together.
Most of our therapy hours were a total wash because Dr A was a big fan of sports metaphors and I am allergic to games played in groups. He constantly exhorted me to “do an end run around” whatever problem I was experiencing, the meaning of which was a mystery to me until the invention of Google many years later.
Our time together was not entirely neutral, though. Once, when I wailed about my desire to just be happy, Dr A informed me that no one is really happy, and the best most people can hope for is occasional contentment. True happiness, he said, is mostly a myth, except for special occasions like one’s wedding day or winning a game, which left me out of the running for happiness entirely since I had no boyfriend and played no games.
Dr A wasn’t a bad guy, but he definitely missed his calling. I’m sure he would have been an excellent orthopedist or podiatrist, but as a person whose job was to help people find a way to be their best selves, he pretty much sucked.
Well, except for those green and white pills. They kept me hobbling along in a state something short of suicidal until Zoloft (which worked much better for me and which I took for over 15 years) came onto the market, so for that, I am grateful.
What Dr A didn’t know was that, while I suffered from many wrong-headed thoughts and ideas, over-high expectations were not among them. In fact, the most destructive belief I have been carrying around during my time here on planet earth is the one that says I’m no good, not worthy, incapable (yes, that’s all one idea, but there’s no word that grabs it all at once). My parents both came to parenthood with the belief that self-confidence was ugly and to believe oneself to be special was a sin (ideas they learned from their own parents), so instead of appropriate humility (I am special, and you are special, and each of us has something extraordinary to offer and receive from the other.), I learned to hide. I learned to hate myself, and I learned to believe that I deserved no better than whatever came my way by chance or accident.
Dr A didn’t do a thing to disabuse me of those beliefs, which seems to me now a tragic lost opportunity, but shit happens, and Dr A was just a guy who went to medical school and then did his residency in psychiatry. He didn’t know that when I said “happy,” I didn’t mean I wanted a life of nonstop orgasms. I just wanted to feel like I belonged in my own life. I wanted to feel needed and wanted by the people I loved. Most of all, I wanted the inside of my head to be a less dangerous place.
I haven’t seen Dr A in something like 23 years now, but if I remembered his name I would write him a letter and tell him he was wrong, and I hope he has discovered the truth: happiness is a real thing, and ordinary people can experience it.
Which, can I just tell you? This is not something I ever expected to say. Ever. To be clear: major depressive episodes aside, I have not generally been a miserable person, and I have heard the tempting call of bitterness and resisted. I’ve been content for decent stretches of time. What I haven’t been until this past year (and definitely not the whole year; it seems to me that this is something that actually takes practice) is happy.
I meet none of the qualifications that I would expect a happy person to meet. I’m not rich (in fact, paying the bills is often a challenge) nor do I have a successful career. I’m not thin, my house is a mess, my sister and I don’t speak, and one of the dogs chewed a hole in the couch. Life isn’t easy. Carter is stable but he remains (will always remain) seriously ill. My trichotillomania hasn’t improved, I continue to grieve for the years I lost with my two eldest children, and I still miss Jacob with a breathtaking intensity that leads me to drag his baby blanket out of the cupboard in the middle of the night and hold it under my chin while I cry.
And yet, in the midst of it all, this happiness. When I started to feel happy a year ago, I was sure it was nothing but a product of Abbie’s return and that it would dissipate like thunderclouds when the excitement of her return passed, but no. It has remained.
How cliché, to say that when I wake in the morning I am eager for the day, but it’s true. All of it, everything, is more vivid. The books I read are better, time with Brian is more joyful, hours at a table with friends absorb me completely. The music and the sky and the feel of a freshly made bed are all much muchier. They have regained their muchness. At church, in groups, and during meetings, I am more present. When people I care about suffer, I experience their pain with them (which is apparently a part of happiness; who knew?) and feel deep sympathy. The love I feel for my kids is more open. The concerns I have for them cripple me a little less and when I pray for them I open my hands both figuratively and literally. God is God of all, my kids included.
What I know now is this: happiness is not an accident, but neither is it a goal toward which I may work because I am so confused about what will make me happy. It is nothing like the happiness we see on TV that comes from big houses and children who go to Ivy League colleges and beautiful dresses that drape gracefully over slender hips. For me, it is some mysterious combination of praying, serving, loving people, and creativity. Oh, and the right drugs; don’t forget about those, though don’t overestimate them, either. It’s a rearranging of priorities and the release of some expectations that prevented me from laughing as long and as often as I need to. Happiness is somewhere inside the act of showing up and to hell with doing it with style or finesse (no points for those, anyhow).
It is not, as I had long expected, the product of ignoring injustice in the world, or becoming immune to it. Happiness does not preclude advocacy. It doesn’t come from being very, very good (clean! on time! frugal! organized! efficient!), or from external success or approval. I think maybe happiness has a great deal to do with letting my freak flag fly. God made me this person, the girl I was and the woman I am. If God wanted me to be some other person, God would have made me another person. So simple, and so very difficult.
There is so much more, a thousand more fears to surrender, relationships to heal, and anger to repent. There is a mountain of shame to…what? I have no idea yet what one does with that toxic stuff, though I am sometimes able to see it for what it is, rather than simply accepting its definition of me.
But now I know this: I get to be happy in the meantime. I don’t have to wait for all the anger, shame, fear, and heartache to go away to be happy because I can be happy today. Not nonstop-orgasm happy, not nothing-ever-hurts happy, not everything-is-perfect-forever happy, but I-belong-in-my-life happy.
I’ll take it.
Hey, did you hear? I’m going to be on The Ricki Lake Show. For real! The Ricki Lake Show: Inside Childhood Mental Illness (if you click on that link, you can watch the promo) will air on Wednesday, February 6, 2013. Check your local listings or use the “where to watch” link at The Ricki Lake Show page to find out what time and channel it’s on in your area.
The setting of a great hope is like the setting of the sun. The brightness of our life is gone.
—Henry Wadsworth Longfellow
I had a therapist about a year and a half ago who gave me a hard time for maintaining Jacob and Abbie’s bedrooms when they had been gone so long. “It’s not healthy,” said the therapist. “You have to accept that this is what has happened in your life. Your kids are gone.”
I knew the instant she said it that she was wrong. In the darkest months and years of our alienation, when those kids and I could barely speak words to each other, those beds were the only invitation I could extend to them. The space I reserved for them in my home was proxy for the love they could not hear me speak. When Abbie came home, after the angst and anger were finished, she told me that she always knew she could come back, knew her bed was there for her, and even when she hated me, knew she was welcome in my family.
Jacob will be 19 in just a few weeks. He hasn’t lived in my house for nearly 5 years (and it may be nearly 6 years but the math is far beyond me now), and tonight, for the first time in 19 years minus 52 days, there is no bed for him here. I boxed up his few things and put them in a closet, took his bed to the donation center, and had his dad come get his drumset. With Abbie, I have experienced a miracle, but if there is a miracle with Jacob, it will be of a different sort.
This truncated motherhood is unnatural. Wrong. Jacob was the brightest part of my life, and in five long, excruciating years, I still have not learned to be content with his absence. I don’t know exactly what kind of pain I would be feeling if Jacob was still my son in all the ways, instead of just in the biological ones, as he moved into his adult life, but I know it would be different. He is mostly a stranger to me now. He is the person who made me a mother, a boy-man I find endlessly and intensely fascinating, but he is not really my family anymore. I won’t give up. I could never give up on knowing my magical, enchanting son, and to other parents suffering the horrors of alienation I always say, as long as our children are alive, there is hope. But what hope I had for a relationship beyond a perfunctory one is very small now.
He hasn’t lived with me in a long time, but tonight, for the first time, he really doesn’t live here anymore. There’s nothing for it except to breathe into the pain and pray that some day, we will all be healed; that eventually, I will lay down my grief and walk away from it, even for a little while.
But for tonight I am on my knees, screaming I love him I love him I love him and begging the universe for just one more chance.
If you truly love someone, do you deny them the best that life has to offer?
I don’t hate Native Americans; I just think things will work out better for everyone if we move them to their own special areas.
I don’t hate people with cognitive disabilities; I just think they shouldn’t be allowed to have babies.
I don’t hate Jews; I just think they should wear a star on their clothes.
I don’t hate the Japanese; I just think we’ll all be safer if we put them in camps until the war is over.
I don’t hate women; I just think they belong in the kitchen and not the voting booth.
I don’t hate black people; I just think they should sit at the back of the bus.
I don’t hate Muslims; I just think they should dress like regular Americans if they want to live here.
I don’t hate Mexicans; I just think we can’t be too careful about making sure they’re here legally.
I don’t hate fat people; I just think a thin person would be better at this job.
I don’t hate gay people; I just think they shouldn’t be allowed to get married.
For Brian on our 12th (!!!) anniversary. My companion, friend, partner, and lover, I can’t imagine my life without you, can’t bear to think of a world in which you are not my spouse. I pray that before the next 12 years of our marriage have passed, love and justice will grow in our nation until every couple who wants to be married, will be married.
Happy anniversary to my beloved. You’re my favorite.