A RADish is a child with Reactive Attachment Disorder (RAD). RAD is an attachment disorder that results from a traumatic event in a child’s early life. Elle was adopted from Russia and spent the first nine months of her life in an orphanage. Her birth mother delivered her, terminated her parental rights, and left Elle at the hospital. A month later, she made her way into the Baby House in Kursk, Russia.
The orphanage was nice, as orphanages go. It was clean, old and colorful in a Russian kind of way with fairy-tale murals painted on the walls. But an orphanage is an orphanage, with too many children and not enough warm, loving arms to go around. When I first saw Elle, she was expressionless. The eyes that looked back at me had no emotion, just a blank face. The only time I ever saw her laugh or smile was when she was walking. She didn’t particularly like to be held or rocked. She was independent at an early age.
I thought all of this was normal for a child, and for Elle. What did I have to compare her to? We started having problems with her when she was 5, the summer before she started Kindergarten. She would become sullen and withdrawn if things didn’t go her way. She started taking things…from stores, my room, etc. She would argue until the cows came home and dinner was a nightmare. When she was really angry she would mark on the walls with chapstick and rub Vaseline all over her bathroom.
When we adopted Bunny, she took Bunny’s things and hid them. All the while denying that she had done anything wrong. Then she started taking food. She would get up in the middle of the night and raid food out of the pantry. Not just chips and cookies, but powdered jell-o, baking chocolate, and sugar. We found leftover chicken and frozen salmon stashed away in her closet, along with things she had stolen out of my bedroom and office.
It came to a head when we decided to move a year ago. I received a call from the school’s safety officer. Elle had admitted to stealing two cell phones and an iPod. The iPod was hidden in her closet and I could bring it back to school. As you can imagine our horror, we could see a life of police stations, courts and jail in her future. We couldn’t understand it. She is incredibly intelligent and charming. What is wrong with our child?
She had been in therapy for a few years, but we weren’t making any progress. It was finally suggested that Elle’s issues were beyond our therapist’s experience and we needed to look for a different one. Life was unimaginable in our house, Elle was out of control and I wasn’t seeing much joy or hope. We took her to another therapist who diagnosed her with bipolar disorder…based on a 50-minute discussion with us.
No, something wasn’t right with this. Consequently, we never went back and kept looking for an answer.
I finally stumbled across it while searching the internet. Reactive Attachment Disorder. It gave a list of behaviors and almost every one fit Elle to a tee. We read, and read, and then read some more. Could this be it? Fortunately, there were a couple of therapists in town who specialized in RAD. A couple of phone calls later and we had a new therapist.
The therapist began working with Colby and I. The first behavior to change had to be ours. We needed to learn to parent differently and be a rock-solid unit before we could even tackle Elle’s issues. Then we started to work on Elle. We learned about the Circle of Trust and how with Elle, her circle had been broken.
When “normal” babies cry, their mothers respond and meet their needs. The baby is happy and learns to trust that mommy will always be there to provide for them. Not so with RAD children. Their circle has been broken. Elle cried, but because of multiple caregivers, her needs were not met. She learned she couldn’t trust anyone would meet her needs, so she learned to provide for herself…because she was the only one she could trust.
She carries around a lot of anger and abandonment issues. You may never see them, but they are buried deep behind her brown eyes. RAD children target their mothers. For years she has stolen and destroyed my things and directed her anger and resentment at me. She adores her daddy, but she can’t bond with either of us. Especially me. For years, friends and family have wondered what was wrong with me. She was a charming child, why was I so hard on her? Why couldn’t I give her a break? My anger and resentment spilled over to my relationship with her, with my husband, with my family, with Bunny and with myself. I couldn’t take it anymore.
But when Elle was diagnosed with RAD, maybe, just maybe, there was a light at the end of the tunnel. We got help, and finally, things started to get a little better. Elle was in a different school, one that worked with us and understood why we took her out of school every Friday afternoon for therapy, and why we are taking her out of school for a week to go to a RAD camp.
We have come along way, but we still have a long way to go. Elle has built a brick wall around her heart and won’t let anyone in. The wall is so strong she hides behind it anytime she has to deal with an emotion she doesn’t want to deal with. She doesn’t know how to love. She doesn’t know how to trust. But we are working on it. We are working to chip away at the wall. I have fundamentally changed my life in the last year. Colby and I have fundamentally changed the way we parent in the last year. Elle has made some progress, but she still has a way to go. We have a way to go.
But we will bring the wall down. One brick at a time…together.
Elle, I know you are reading this post. You know I love you with all of my heart. Together, we can do anything.
Ever since 2000 when our daughter Elli was born with life-threatening heart defects and nearly died three times the first three weeks of her life, I’ve experienced blindsides.
I wish I referred to the movie.
Blindsides are swift and completely unexpected emotional breakdowns, often experienced when sharing your story with a stranger or a group of strangers.
As the parent of a child with special needs, I have shared Elli’s story countless times with medical personnel, school staff, new acquaintances, and random strangers we’d meet out in the community. I have had the opportunity to share our story for some college classes for special ed teachers and therapists, and for potential donors to our hospital.
I never know how those presentations would go. Will a blindside slam me into a teary mush pile this time? Or will I be able to communicate clearly and strongly?
When Elli passed away a year and a half ago, the blindsides changed. They began striking at any time, in any place, doing anything or nothing at all.
Anything.
A wisp of a memory… her sister’s laugh that sounds exactly like hers.
A glimpse of a familiar-but-no-longer-visited place… driving past her aquatic therapy pool.
The scent of the hospital’s blanket warmer, so comforting after yet another general anesthesia.
The discovery of a long-buried personal item… her bath towel.
Anywhere.
…sitting at the piano in church on Sunday.
…driving down the highway.
…laying in bed, drifting off to sleep.
…watching a movie with my husband.
…waiting for my son’s school bus.
At first, they assailed me daily, even hourly. With time, less frequent and more unexpected… except in the fall near the anniversary of her death and in the winter near her birthday. Those are memory minefields.
At first, the pain was bitter, cutting deeply, exposing raw wounds. Now it’s more of a wistful dull ache, a pain of long separation, hidden under scar tissue and wrapped in hope of heaven one day.
Have you seen me? The random weeping girl in front of the yogurt at the grocery store? If you do, would you spare a tissue? I promise, if I run into you, eyes red, face puffy, I’ll dig one out for you.
Where’s the craziest place you’ve ever been blindsided? What helps you get through it?
[What to say when a friend loses a child is such a mystery. I was the mom at her daughter’s casket in the fall of 2008. So when a friend of mine lost her young son to a progressive fatal disease, I wrote her a letter somewhat like this. When my daughter died, I craved a letter like this.]
Oh my friend. My heart breaks that you find yourself here, where I have walked and wept. Every hour I lift you and your family in prayer, pleading with God to pour out grace and strength and rest over you.
I was so encouraged by the outpouring of support for you and your family at your child’s visitation and funeral. I well remember how exhausting that was, but how much the presence of friends both old and new holds you up in those initial days after. I pray that you drew strength from that love poured from so many who love you and loved your child.
Please consider me a willing listening ear to hear whatever you need to say, or to just sit in silence when the words won’t come. I’ve walked this dark road and would be pleased to walk it again with you, if that would help.
Even now, 21 months later, some of life’s moments still seem surreal. It’s like I step out of life and look at it in disbelief. Can this really be the life I’m living?
The day Ellie died I felt myself split in two. I remember riding in the ambulance with her and yet looking at the scene and thinking, “Is this really IT? Look at the way they are working on her. I think she is gone. Is this really happening? Is this really the way it’s going to end?”
And that numb detached feeling persisted through the funeral planning, the visitation, and the services. Whenever I’d step back into my life, I was saturated with sadness. I remember thinking that I had to figure out how to stop crying because it hurt too bad. My sinuses and eyes were swollen, throbbing, aching. Grief is a physical pain. So I would step back out when it got to be too much.
Ever so slowly, the crying slowed, though it will never stop completely.
Ever so slowly, I could move through a day a little more.
Grief is exhausting. I had no idea. I needed help with food preparation, clean-up, housework, laundry… for weeks. Every task took everything I had. Things I had done before without a thought took every ounce of concentration so that I didn’t leave water running or the stove on or milk on the counter.
At the same time, all those days I couldn’t figure out what was taking so much time and effort. Without Ellie and her needs, the days gaped empty. Again, another surreal element of that time. Those days finding your way through is so awkward. You feel the yawning emptiness in your family: Folding laundry and folding your child’s things for the last time, and then having one less pile of clothes. Their empty bed. Their silent equipment. I constantly looked for what I was forgetting, constantly counted heads because I wasn’t confident I could keep track of everyone anymore.
It took at least a month for my energy to return.
If I may offer a bit of advice? Many will say, “If there’s anything I can do…” Take them up on it. Mention the lawn that needs to be mowed, the dirty dishes, the vacuuming, the leaf-raking, the snow-shoveling, watching the kids so you can sleep, writing thank-you notes (I personally think that a grieving parent should never be expected to send thank-you notes.), doing laundry. It will give you rest and they will love to be of some small help to you.
And in the midst of crying your own tears and asking your own questions, your other children have fears and questions. They are worried for their parents. They make valiant efforts to understand death and funerals and where their brother or sister is versus where their body is.
I write in hope that knowing others have walked through this gives you hope. I hope that you can feel my arm around you as I weep with you.
When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
I’d do anything for my wife. It’s a running joke between us that I’d even die for her—take a bullet, a knife, name your poison. The joke part is that for as long as we’ve known each other, she’s said she’d never return the favor.
What makes this funny now (and when I say funny, I really mean sad) is that after 22 years together, we’ve never felt more apart. She wants to end it. She says she loves me, but isn’t in love with me, and she’s not sure if she ever truly was. She says I’m her best friend but she no longer feels comfortable being naked with me. She wants to move on with her life.
I know the way we’ve been living is unhealthy, codependent and whatever else Dr. Phil is talking about these days. I know that the reasons we first got married—my mom was dying of cancer, I needed someone to take care of me, and Caryn needed someone to take care of—are no longer reasons to stay together. Christ, I’ve been in and out of therapy half a dozen times since we first met. But I also know that, unhealthy or not, this is the only love I’ve ever known.
Caryn says I’m too intense, that I’m critical, that I’m sarcastic, that I’m depressed, that I’ll never enjoy going out dancing with her. What she’s really saying is that I’ll never be the person she truly wants, and she’ll never be the fantasy woman in my head.
For the last five years, we’ve been going through the zombie suburban motions for the sake of the kids, or because our hands were tied financially, or whatever other excuses we made for hanging on to the status quo. Six months ago, during one of our typical Sunday-morning arguments with the bedroom door shut and the kids downstairs, Caryn said, “no mas”—and since then, our everyday life has been like a rehearsal for death.
I picture myself growing old and being alone, and I get that sick jolt in the pit of my stomach when it hits me that I’m done, it’s over. I’ve always been the type of guy who, given the choice between a straight line and a more circuitous path, would choose . . . the path Caryn chose for me. Heartbreak and grief—ping-ponging between numb and angry—I have to do alone.
Caryn’s laugh has always been the biggest turn-on for me, and we’ve laughed together a lot, from the first time she showed up at my apartment more than 20 years ago wearing a pair of Minnie Mouse sunglasses. But during our zombie years, she slowly turned her back on me. The worst of it was lying in bed knowing I couldn’t touch her. It sent me back to our first few dates when, in a foreshadowing of her future ambivalence, she wanted to break up. I’d worked hard to change her mind then, bombarding her with late-night calls. Now I was determined to do it again. My plan was simple, really: I’d find a way to change myself. Caryn would fall in love with me all over again and we wouldn’t have to have this stupid conversation for another 20 years.
So I shaved off my beard.
I know that doesn’t sound like much, but to me it was a symbolic gesture signaling more significant changes to come. I’d worn a beard for more than 30 years, and I told everyone I’d finally shaved it off because it was getting gray and making me look old. But the truth is that I did it because I wanted Caryn to see me differently.
“Did you get a hair . . . OH. MY. GOD!” she howled when I came home clean shaven, feeling like a new man. She said I looked younger, but really not all that different, and a few minutes later she went back to the Sunday Times crossword puzzle.
It was sort of the same deal when we both got tattoos a few summers ago. I got a large Chinese symbol on my left arm that roughly means “to live,” and Caryn got a smaller version on her ankle that means “freedom.” We said these would be constant reminders of what we want out of life. We also thought they looked cool. What I didn’t understand at the time was that although I wanted “to live” with her, she wanted “freedom” from me.
When my close shave failed to get her attention, I tried something really scary: yelling at our kids. Caryn was always on my case for ceding the responsibility of disciplining our two sons, because it meant she was always the bad guy. She was the one who told them “No!” or yelled at them for fighting or leaving empty Cheez Doodles bags under their beds, and then I’d waltz in from work, plop down in front of the big-screen TV and hang with my homeboys.
So no more Mr. Nice Guy. The next time Rob, 14, and Zach, 13, went at it, I swung into action. “What the hell is up with you guys? When are you gonna grow up and stop this stupid crap?” I screamed, making sure Caryn heard every syllable. I took away Robbie’s laptop and Zach’s cell phone. They shrugged if off, since they knew they’d get it all back in a matter of days, if not hours.
“Why are you yelling at them like that?” Caryn asked, and for the life of me, I didn’t have an answer.
I’d always let Caryn make the major decisions in our life. She was the one who said let’s get married, the one who said let’s have kids, the one who said let’s adopt when we couldn’t. As I saw it, this was about love—it made her happy, so she’d love me even more. In fact, she complained for years about the burden of having to make all these decisions, and now she wanted out. Well, I’d show her.
“I want Chinese food tonight, goddamn it!”
“I want to see City of God!”
“I want to build a new deck in the backyard.”
“I want to have sex—now!”
To all of which Caryn pretty much said, “Okay.” Things were finally changing around here, I thought, but for some strange reason I pictured George Costanza saying it.
When I wasn’t barking orders, I shut the hell up. Caryn and I had always been great talkers. We’d go on about everything, pick it to pieces and then start all over again. You can avoid a lot of stuff by talking. The truth is, when one of us talked, the other didn’t always hear it. We took in what we wanted and interpreted it to fit our own rationalizations and arguments. So I decided to try the tough-guy silent treatment (which, not coincidentally, was both our moms’ favorite form of punishment). I also gave her more space. I’d go downstairs to watch TV instead of lying silently in bed next to her. If she was in the kitchen, I’d go into the living room. On weekends, we’d go our separate ways and meet up for dinner. I never felt more disconnected in my life. It was as if blood had stopped flowing to my heart.
My friend Doug, the art director for the Web sites I’m in charge of, would listen sympathetically and share whatever emotion I was tangled up in. If I was pissed at Caryn, he’d call her “that bitch,” and if I was feeling the least bit hopeful, he’d egg me on. He told me one day he thought I was being incredibly selfless, and went on to say how men, in general, are all too willing to twist themselves into pretzels. I nodded absently, but knew that he couldn’t be more wrong. It was all about fear. I was scared to be alone. I was scared of the unfamiliar. I was scared of opening up. And (damn you to hell, Dr. Phil!), deep down I was scared to be happy—with or without Caryn.
After a month or so, my Kafka-esque transformation just stopped. As I looked at myself in the mirror while shaving, it hit me that, other than my beard, there was no growth attached to any of my so-called life changes. Transforming myself into someone I thought Caryn would want me to be was exactly what she had always wanted me not to do.
The real tough stuff was still locked away because I didn’t have the courage to go there. The deeper truth of our marriage, the stuff we’re not proud of but that connects us on the most basic level—fears, judgments, evasions—that’s what we both needed to face if our marriage were to have any chance in hell.
So for the past few months, we’ve been doing the therapy thing. And when we walk out of each session, Caryn says it feels like she’s just taken a bullet, a knife, name your poison.
Under a heart-shaped magnet on our refrigerator, there’s a New Yorker cartoon I knew Caryn would get a kick out of, a picture of two women immersed in serious conversation. The caption reads, “It’s easy. The first step is to entirely change who you are.”
It’s the second step that’s a bitch: figuring out what we really want. I keep asking myself the same questions over and over. Why do I still want to be with someone who no longer wants to be with me? Am I really in love with her, or do I just need to be loved? I could give you the usual psychological mumbo-jumbo—my need to stay with the familiar rather than explore the unknown, how Caryn reminds me of my mother and vice versa—but I think it’s simpler than that. There’s a place in my heart that is Caryn’s, and no matter what happens between us, that place will always be hers.
Sometimes I imagine how it would be if we went our separate ways. I see myself sitting alone in an empty apartment and there’s a knock on the door. It’s Caryn, and she’s wearing those ridiculous Minnie Mouse sunglasses again. She’s standing there, crying softly, and between sobs she says, “I’ve been such an idiot!” I hold her tightly in my arms, and as she takes a deep breath, I feel her holding onto me.
