Monday, November 15, 2010

One Mother Desperately in Search of a Village

When I was a brand new mother, I needed compassionate neighbors. Instead I had judgmental ones I had a special needs child, and I had postpartum depression. One or the other would have been enough of a challenge. I was hit by a double whammy. Judgmental neighbors. Friends and family seemingly putting on track shoes and checking their watches. I had my mother to talk to, and thankfully I found a good therapist. But I didn't seek her out until I was months into going it alone with Kid O. Family and friends and one neighbor apologized, admitting they didn't realize how difficult Kid O was. But that was could comfort at the time when I was going through the worst of it.

Kid O was too tiny and I was too top heavy. I couldn't breastfeed her. I needed both hands to lift a breast, and no one who could help me with the mechanics of it. I hurled the book, Womanly Art of Breastfeeding against a wall. Even now when women speak about the endorphins, I feel hostility rise in me. The smug, self-righteous slogan, "breast is best," leaves me wanting to scream, "I tried it, OK? Now get off my back." We still have the rocking chair I was going to nurse her in. I pumped for three months. I felt I owed Kid O that much. Kid O was a preemie and I couldn't keep up with her demand. Nothing made me feel more like a failure as a mother.

Any romantic notions of motherhood I had went out the window. Not only couldn't I provide Kid O with nourishment from my body, I couldn't seemingly do anything right. When she was two months old, she started putting her fist in her mouth. The one mother who would talk to me told me she was teething. I told that to the doctor. He found it hard to believe. But the mother down the street was right. Preemie or no, Kid O was teething. And she was miserable. Possibly it was her disorganized nervous system or possibly it would have been that way, anyway, but meant for a lot of long nights. Kid O would scream bloody murder whenever I would try to put her back in her crib. I felt self-conscious about it. The neighbors were probably awakened by the screaming and that is probably why they called the police. Their sleep was only interrupted for twenty minutes. Mine was interrupted for several hours.

There was a pamphlet about cerebral palsy they had given me as part of a packet they probably give all mothers with preemies. One of those what to look for things. But no pamphlet or pediatrician could explain to me why this baby cried every time she had a bowel movement. When I switched pediatricians, even she couldn't tell me. But knowing it was CP finally caused it to make sense. Kid O had very little in the way of abdominal muscles needed to have a dump without pain. It's really a common sensical explanation, if you think about it. So why didn't the pediatricians? And why didn't anyone recommend a diet that would have been easier for her to process?

No one had answers for me. There was no one who could whisper reassuringly, "it'll get better." Intellectually I am sure I expected as much, but in the throes of it, things felt hopeless. I needed answers. Why me? Had somewhere in my youth or childhood, I must have done something bad? Really, really, really bad? Why her? Kid O was an innocent, was she not? What fine print on what contract? I spoke to God, and was met with a deafening and a seemingly indifferent silence. My therapist said that God was big enough to take my anger. After a while I stopped talking to God. I decided this had to be entirely random because no God would cause such a thing to purposefully happen. As what? A form of punishment? It's then I decided that God had left the building and left no forwarding address. This was just between me and the universe, and the universe simply doesn't care. The universe is random, and events that happen are random, too. Someone could answer that I somehow missed the point about God, but I figure that is as good an answer to why me and why her as I am going to get. When I stopped trying to receive answers, a lot off my pain went away. It just was. Life was unfair, and that was that.

I remember consciously thinking that I had to recover my sense of humor in order to somehow get past this overwhelming grief and depression and frustration. At the very least Kid O deserved a mother who could laugh. What mattered is that, despite me, she was seen as a joyful child. I have no idea how Kid O managed to develop her wicked sense of humor. She was and remains quite an imp. Along the way Kid O taught me to laugh again, and she taught me and continues to teach me to never give up. I have had a lot of low points over the years, and then I look at her continuing to figure out how to do simple things and I remind myself that she is the one with the disability. Not me.

I managed to overcome many emotional and psychological challenges. Other women have not been so fortunate. You read about them every day. They kill themselves. They kill their children. They don't have a support system in place. Or they don't have my emotional strength. There were times when I didn't think I was going to make it. That is why we need a village and not just lip service to the idea of a village. I don't know what the statistics are as to how many suicides are in direct correlation with post partum depression. Does it matter? What matters is that women are suffering, and so are their children. Postpartum depression is very real, and we need more support for those women who suffer from it.

We do not really give people with any level of mental illness permission to express themselves, let alone women with postpartum depression. We don't want to hear about anything negative that will place cracks in any myths we have about motherhood. Motherhood is supposed to be about women cheerfully bustling about baking cookies, taking children to the park, singing songs, and kissing skinned knees. Motherhood is supposed to be Snow White writ large, bluebirds fluttering about while dishes are being done. Motherhood is expected to be effortless. We do not want to hear about primal screams or crying jags or women resorting to drinking or pills. We do not want to hear about women with a brand new baby thinking all is hopeless. We do not want to hear about women being angry or resentful towards this tiny being they chose to bring into the world. We resent these women for showing us the downside of motherhood. How dare they wave their unhappiness in our face? And so women like me quietly suffer, and some of us slip into oblivion. We act out on our darkest fantasies because we don't have anyone who will whisper to us, "Hang in there. It'll get better."

We and our children end up as unfortunate headlines. Or worse. We are castigated by smug, self-righteous people who assume that somehow they would not have slipped into this abyss. They would have done better. I can count on one hand how many times I was asked how I was coping. We judge ourselves for our failings. We do not need to have other people compound those harsh judgments. Too many of us feel inadequate. We do not need to be handed a larger club with which to beat ourselves. We need neighbors, friends, family who will ask us if we are OK. We need kindness and compassion. We need casseroles. We need someone who can lend us an ear or a shoulder. We need people who can help us remember how to nurture ourselves. We need people who can help us laugh again. In short, we desperately need a village. Please help a mother find a village. Before it's too late.

Saturday, November 13, 2010

The Unforgettable but Frequently Forgotten Kid Q

Kid O's younger sister, Kid Q, is my magical child. I had given up on the idea of Kid O having a sibling when it was confirmed that Kid Q was growing inside me. I laughed. I was 42. Shortly after my 43rd birthday, Kid Q was extracted from me via a second c section. Kid Q was a propaganda baby. She got up. She ate. She went back to sleep. Quite a change from Kid O's intense babyhood. Kid Q is, in a certain sense my calm child, although that is at times misleading. When I needed to pick Kid O up to take care of her, Kid Q did not get upset when I put her down. Perhaps on some level she understood that Kid O had special needs.

Kid Q was pretty placid. That is, until she got her legs underneath her. Having dealt with a handicapped child, I wasn't prepared for that. She stood up one day and that was that. Kid Q is also very flexible and athletic. When she was starting to really take stairs, she used to pretend to lose her balance. Took me a few times to realize that was a game for her. Even so there was one time when she lost her balance. She was coming down the basement stairs to find my husband and me when she lost her balance and somehow landed in a big, tall box right by the stairs. She managed to grab on the top of the box and held on like the cat in one of those "Hang in there," posters. We raced to her, and she was none the worse for wear. I have no idea how she managed to have the reflexes and the presence of mind to do that. I am exceedingly grateful she did.

Kid Q didn't really talk until she was four. She gesticulated a lot. To this day she will wave her arm in front of my face to request water. Because she didn't really speak and given superficial characteristics, some assumed she was a Down's child. When she was evaluated for pre-K, she was labeled as having a "slight cognitive delay." This label stuck until last January when she turned nine. Now she is labeled as being learning disabled, although, what precisely is that disability has yet to be determined. I am OK with it because Q does have sensory issues. She is also emotionally and socially behind. Doesn't matter to me what the disability is, just as long as she is in a class that is right for her. She is not being wedged into a classroom with 34, 35 other kids, and that is probably half the battle. She is being given age appropriate work, and she is in a regular classroom for her morning reading class.

Back when she was in first grade, they tried to immerse her entirely in a class team taught by both a Special Ed and a Gen Ed teacher. I was told that she started to show signs of sensory overload shortly after lunch, so it was agreed that she would finish up the day in her old Special Ed class. I was disappointed, but I knew we had to do what was best for Kid Q. Then, after five weeks,they switched Special Ed teachers for that classroom. Shortly that the new Special Ed teacher was absent. I got a call I had been dreading. "Mrs. (real last name), Kid Q is in the principal's office with the assistant principal." My stomach lurched. "The Special Ed teacher was absent, and the Regular Ed teacher didn't know how to handle her." Kid Q had had an entire sensory overload meltdown. In front of thirty-five kids and one teacher, she stripped down to her underpants. She was going to to back to her old Special Ed room. No discussion. No passing Go. No collecting $200. It was for the best, I told myself, but I was mortified, all the same.

The following year her second grade teacher tried to have her included in a Regular Ed Reading class. "She is climbing all over the bookcases," I was told. We had a meeting. She was promptly yanked from the class. A month or two later, when it was determined she was more mature, we tried again. Different class. Different teacher. She thrived. I was relieved. This year she is once again in Reg Ed reading, and the rest of the day in Special Ed. Seems to work for her. I am hoping that, in time, Kid Q will spend more time in a Reg Ed setting, but, for now I am content that she is exactly where she needs to be. Overall her behavior has improved, and she is being a better listener.

Kid Q did not have a good start academically. Having Kid O as an older sister confused her. I imagine she reasoned to herself that since Kid O got her needs met without talking, why did she have to talk? Thankfully the principal of the school where Kid O was already attending, recognized that Kid Q would do better if she were in pre-K, and she pulled strings to make it happen. Once Kid Q was attending school, she took off like a shot. There was no holding her back. Suddenly this child who was only gesticulating and grunting was speaking to me in whole sentences. Not over night, but steady progress. She took to reading very readily.

I knew she was a creative kid. Kid Q is a prolific drawer. I have large folders of her drawings and other artwork from early on. A couple of Chanukah, Christmases ago, Kid Q took a toy kiddish cup and placed a tiny Christmas tree basket inside of it. She made two drawings of it. Both look like Art Nouveau. I am still astonished at how she decided to put together things as a model for a drawing. That never would have occurred to me. Technique will come, but no one can take away from her creativity and her innovation.

Kid Q also has rhythm. I would never tell her this, but she is never going to have the body for a ballerina. She has a slight birth defect of a concave sternum that affects her overall structure. Causes her belly to stick out, and, I am told, will later give her quite the cleavage. Her natural athleticism lends itself to a Gene Kelly style of dancing. Not a bad thing. I hope she gets to explore that in years to come. I wouldn't consider her graceful in a ballet sense, but she has a fine sense of balance, and her flexibility has earned her the nickname of Little Houdini. As her yoga instructor can attest to, she is a natural yogini. She could do the sleep pose long before she took a single class. For those who do not know what I am talking about, that's being on one's back with feet up against ears and arms coming through opening where feet are pressed together. (Apologies. Not being kinesthetic, I have difficulty describing physical and spatial things.)

When Kid Q was little she used to make up really elaborate dances. I have always marveled at this girl, who remains small for her age. Her older sister may be Little Comedian, but Kid Q will always be my Tiny Dancer. And she will always be my Kukla, from when she was a baby. Not much hair, bright red cheeks, and a very sweet demeanor. I have since shown her old videos of Kukla, and she loves it. Kid Q also bears an uncanny resemblance to my dad and to the rest of his family. My father died December 9, 2000, and Kid Q was born seven weeks later. She was named for him,and, whenever she makes faces I am reminded of him. Kid Q is truly unforgettable.

Wednesday, November 10, 2010

We're Gonna End up a News Story, or, Don't Worry About Me, I'll Sit in the Dark

Q--How many Jewish mothers does it take to change a lightbulb?

A-- Don't worry about me. I'll sit in the dark.

"We're gonna end up a news story," I used to say over the phone to my husband.

Kid O was a beautiful baby. Every unwanted or unexpected noise or motion would upset her. She used to scream in my ear as I held her in my lap. A sister in-law recommended a nanny to give me a break. She had had experience with preemies, I was told. But by the time this woman had met that preemie, the little girl was more like a normal baby. No complications. I knew my nanny was quitting the moment she handed Kid O back to me as if passing a football, and bolted out the door.

The neighbor woman who had had a child about six months before me, found other women with babies to stroller with and go to the park with. Kid O and I were alone. I would take us out. Sometimes, like most babies, Kid O would doze in the stroller. But other times she would scream bloody murder. Resentment welled up inside me. I wanted to get out and get some sunshine, see the flowers, and I felt that this tiny person was denying me that pleasure. I also felt extremely self conscience. There wasn't a large enough rock for me to crawl under. Intellectually I knew that she wasn't doing this on purpose, but that's how it felt.

I had a baby who hated being in the stroller, got upset by every single train, plane and automobile and even quiet conversation from below our second story window. Until I shifted us from the sun porch to the back bedroom, would take me on average four hours to feed her. Kid O would keep me up for hours while she was teething. She would scream on average twenty minutes if I tried to put her back to bed. She wasn't even sitting up on her own, never mind standing or walking. I couldn't breastfeed her. I was too topheavy and Kid O was too tiny. In frustration I hurled The Womanly Art of Breastfeeding clear across the room.

There were times I wanted to hurl Kid O across the room, too. Even now, years later, I fill up with shame that that thought even entered my mind. I used to imagine it in grim detail, with my husband coming home to find me sitting on the couch and a broken body nearby. What stopped me was that, aside from not wanting to go to jail, was being fearful of losing his love. That's right. I cared more about having my husband hate me than whether or not I still had a baby. Of course I would have felt tremendous remorse. Kid O is the child of my heart, and I would have been beside myself. But in those moments, I didn't care. I just wanted my time back. I wanted my sleep again. And I wanted a "normal" child. Like all the other moms. I wanted a child who was physically able, and, above all, I desperately wanted a child who would say all those cute, clever and precocious things that other kids seem to say to their moms. I am still waiting for "I love you, Mommy," although I know that Kid O and I have a very deep connection. She was and remains my "beautiful mystery."

Why didn't I snap? I often wonder how I managed to survive Kid O's first two years. I have always had a strong moral compass, and I always had a deep reservoir. Even at my lowest, there was always something I could reach in and grab and use. I did this even though I had post-partum depression. Aside from my mom, I had no one to really talk to. My husband was crew for a sailboat race team, and when he wasn't doing that he was off riding his bike. We have healed from those early days, but it was difficult. Family members always seemed to have their track shoes on. No one seemed to have time for me. Or for Kid O.

Months later I received an apology from a friend of mine. She hadn't realized just how difficult a baby Kid O had been. My next door neighbor apologized right before she moved. Seemed as if someone from their birthing class also had a preemie who had cerebral palsy and a disorganized nervous system. This couple was forced out by their condo association. No screaming baby in their building. Nosiree. All of it was cold comfort. Where were they when I needed them?

I looked into a support group. Even if we had a car then, I am not sure I would have gone. I am more of a cave dweller than a joiner. The woman I spoke to talked about her child needing a feeding tube and oxygen. At least Kid O was healthy, as handicapped as she was. I felt as if my need for support was somehow illegitimate. It was a foolish notion, but I never again looked into it.

Sometimes my rage turned inward and I became suicidal. Sometimes I turned my rage outward. I didn't recognize this rage filled woman. I always felt really horrible whenever I expressed rage. I would make the same promise that all abusers make to themselves and to the people around them. I will not do that again. I promise. Thankfully it was sporadic. Didn't make me a bad person. When I wasn't expressing rage and more myself, I was a kind, compassionate, loving woman.

My struggle with rage came to a head when two friends of mine, independently of each other and several months apart, told me that they would no longer deal with my tantruming. I took a good, hard look at myself and decided that somehow or other, the rage had to stop. That was not who I was. That was not who I wanted to be. I did not stop the rage cold turkey. But I did stop. The pain and the shame slowly lifted. There is still a lot of work I need to do, but at least I have overcome the worst of it.

When I first started to leave the dark places behind, I was sure the light was an oncoming train. And then I started to see that it was daylight. I am still getting accustomed to that. Joy is slowly returning, and I am starting to feel whole again. I have returned to gardening. I have a better outlook. And all because people cared enough about me to tell me the truth --- that I was driving them away.

It is easy to judge people, especially when you don't know them. If people had only assumed the worst about me instead of looking at me as a whole person, I'd be in deep trouble now and so would everyone around me. When I read news stories about a mom or a dad harming a disabled child like Kid O, my first reaction is self-righteous anger. How dare they harm a child. But then I think about how life can change in an instant. I ended up with what seemed like an impossibly difficult child. I developed coping skills, but, also, just as I thought that no one cared, people reached out. Many times I could have been that news headline. But somehow I wasn't. When I read these stories I always think: could have been me.