On Becoming a Monster

How does a good mom become the mother that kills her child and herself? With just a little research into the question, you find that mothers killing their non-infant children and themselves are a rarity. The reason why it happens is usually attributed to a severe mental illness (depression), guilt, and a desire to "save their child" from something.

There has been a lot said about the Kelli/Issy Stapleton case (if you haven’t heard about it, a married with three children, mid-forties mom attempted to kill herself and her 14 year old autistic daughter last week) but since I can’t shake my feelings about it, I have to write it out of me.

At first I really couldn’t sort out my own thoughts while being barraged with judgements and opinions on the situation... a system failure, a monster mother who should rot in prison, a child with disabilities who is perfect, a special ed teacher who "wrecked the plan", a child with acute autism who was violent and horrible to live with, a mother who was always fighting for her daughter.

Very few people have walked in Kelli Stapleton’s shoes (yet most people insist they don’t need to in order to judge her) but the majority of those who are walking in her shoes do not decide to kill themselves and their child. I think we can all agree that in her shoes or out of them, Kelli made the wrong choice, but I wonder... why did she come to believe it was the best choice?

What makes someone in Kelli’s situation turn to death as the solution? Death for her beloved child and death for herself.

My first thought would be the lack of a psychological and emotional support system. Yeah, she was a blogger, but who did she have in her inner circle that she could talk to about her deepest, scariest thoughts? Without someone to talk to, a suffering mother has only her own heartbreaking narrative in her head. People say she should have reached out for "help" but the truth is that is not possible. Had Kelli told anyone that she was thinking about killing herself and Issy, she would have been reported and admitted. She would have been judged and she might have lost all her children. Surely in her mind, that would have only made the situation worse. But that is what she needed most, someone to talk to about how bad she was feeling without the fear of her honesty being used against her.

My next thought was corrosion. Two constant forces ate away at Kelli’s ability to maintain a healthy view of the situation. Day after day, week after week... for about 12 years she worked with and against the system to try to help her child. Navigating the system is a roller coaster ride and as the main project manager, Kelli clearly was suffering from battle fatigue... in fact those are her own words. People have pointed out that she had finally gotten what the family needed for Issy... a personal care aide and six months of in-patient therapy but those things weren’t a cure-all for this family and sadly they were interventions that came too late. While Kelli was likely feeling a high from securing those wins, having her daughter rejected from school and being told she should home school her was certainly a burst to her hopes that life was going to get easier.

The second force was Issy herself. Kelli and her younger daughter were the main targets of Issy’s aggression. I’d like to say that I cannot imagine a child that difficult, but I kinda can. I have a littler, adorable version of Issy. My daughter is still manageable size-wise but she is well on her way to tearing up our family. For example, when Kimani is angry she seeks out Autumn so that she can pull her hair. When she is frustrated, she screams continuously until everyone around her is shaken up. What will it be like, I wonder, when I cannot just scoop her up and put her in a safe quiet place to chill her out? Will she still target Autumn when they are teenagers? Will she rip her hair out, bite her, kick her, punch her, throw her to the ground? What I don’t know is how it must feel to be attacked by a teenager every single day. Kelli said that Issy was a member of the "hard to love club" and I can see that. I can understand how over time having such a dysfunctional parent/child or sibling/sibling relationship could erode one’s ability to cope.

How could those forces have been ameliorated to avoid this trainwreck? For starters there should have been a whole-family behavior therapy plan with supports made available to this family back when it was first clear that their child was extremely aggressive and capable of great violence. There also should be a system coordinator available to a family that needs services of any sort, but particularly when the needs are this high. Long ago Kelli needed someone who was an expert at service coordination to help her through the paperwork and to show her what kinds of supports are out there. Don’t tell me she had that because I will tell you that’s bullshit. We have the Medicaid waiver for Kimani and a wonderful Medicaid service coordinator but I am still the one who has to do the majority of the workload finding what is available and running around/completing paperwork to get on lists to make it happen. And as for in-home behavior management help? Not all states have it, and even where they do the lists are so long that getting it is almost impossible. I know this because we are still waiting.

Am I blaming the victim here? No, no. Issy did not deserve to be hurt as a response to her disability. I am simply trying to understand how a caregiver’s perception of what is right can get skewed. Who knows what went on between mother and daughter in the couple of days between Issy’s discharge from the treatment center and Kelli’s attempted murder/suicide. But what we do know is that a horrible idea visited Kelli, probably not for the first time, and she bought into it.

Am I saying that what I wrote here is how the breakdown happened for Kelli? Again, no. I don’t know her. I am just working out in my head how a good mom to a child with severe aggression issues falls down through the years and loses her sanity concerning what is right for her and her loved ones.

So what am I saying then? That I get it. I am walking in shoes very much like the ones Kelli had on nine years ago. I can see how any person who loves someone like Issy or Kimani could over time deteriorate without good supports. I can see how someone could develop a very altered view of what is right, what is best. I can see how monsters are made. I wish that Kelli could have seen it too.

If I Should Die

Or rather if my husband and I should die, what will happen to them?











That has been on my mind lately.

All the life insurance in the world can’t buy new parents.

Am I the only one struggling to come up with a plan in the event the worst happens?

Compliance and Special Needs

A while back a close friend asked me if I fear that my girls will be sexually abused because their disabilities make them easy targets. The answer of course is Yes. The statistics on this topic wholeheartedly agree, and that sickens and terrifies me.

But I told her that of all my children (and honestly I fear abuse of my typical children as well) the one I worry about the least is Kimani. While she might seem like the easiest target of all, really she would be the hardest for a predator to take advantage of. Kimani is not compliant... not physically or mentally. If you tried to get to her in that way she would fight you like a wild cat, and she would scream like one too. I know this because even I, her beloved mother, can’t get a good look at her girly parts when I need to without enlisting the help of daddy. And Kimani cannot be manipulated with promises or threats... you cannot talk her into anything.

Now ya’ll know Kimani is getting big and strong but isn’t mentally developing anywhere near the speed of her body... which means that her non-compliance and impulsive behavior is getting harder and harder for us to handle. She is always a one-on-one and often a two-on-one kid and can never be left unattended for any length of time, unless she is in something she cannot get out of, like a highchair.

I want to take her to Boston to the group of pediatric neurologists there that specialize in post-meningitis brain injury but in order to get this approved by our insurance I have to jump through hoops locally to show that no one here can help her. The local ped neuro we met with prescribed an MRI and a daily dose of Concerta. Huh, it never occurred to me to drug her but I have done extensive research on Concerta and I could see how maybe this would help to calm her and give her what she needs to control her impulses. After thinking it over, I developed a fantasy where on Concerta she would be able to focus and learn, and maybe even go to our public school in their special education K-2nd grade room. I daydreamed that on Concerta, Summer would become like Autumn.

I filled the script and we tried it out. It was a liquid, and so yeah even hidden in stuff she likes, she spit it out. Then, even more well hidden, she spit it up moments later. But some of it took hold and she was different that day. She was subdued but clingy and she cried for me whenever I left her sight. I told myself that she hadn’t had the correct dose and that maybe she was kind of sick and suffering from a general malaise due to an illness... not the Concerta. I went to the doctor and got a script for the pill form and tried again. I had to come clean with her teachers and school nurse because one of the side affects of Concerta is loss of appetite and between that and a bout of diarrhea they thought she was sick and called me in to pick her up. During the discussion about how she was acting on it at school, her teacher said something like, "Is it worth it if she is no longer herself?"

Wow, just freaking wow. No, no it isn’t worth it. Especially after reading a post that blew me away about teaching our children with special needs to be compliant. Do I really want a little girl who will do whatever she is told by whoever tells her to do it? Am I raising my girls to be vulnerable because I am training them to do as they are told, no matter their own feelings about it?

There is a ton of societal pressure on parents to make their children with special needs compliant in order for them to be included in their communities (schools, extra-curricular activities, church, etc.) In fact I would guess that non-compliance is the number one reason why most kids with SN end up in self-contained classrooms or are asked to leave certain public spaces. And I do get it, I understand that Masha needs to go with the program if she is going to make it in a Gen Ed classroom... but at the same time it is likely that she may never be able to discern which authority figures (and for her that may be any adult or older child) not to comply with... even when it hurts.

So how do you raise well-behaved special needs children who may grow up to be too naive to protect their own bodies, possessions, or mental well-being? I have some ideas but not enough.

My kids are not forced to share everything. In fact they have things that are only theirs and I make it a point to tell them not to share those things. For now it is stuff like their drinking cups (my kids are color coded so they each have their own color cup) and certain pieces of jewelry. I also never force or even overly encourage my kids to show affection to anyone, including me. Heck, I waited almost four years for a kiss from Kimani and I would wait four more if she so chose.

But the most important one of all is that sometimes I allow a standoff between us. If one of my girls draws a battle line in the sand, I do not always cross it and win the fight. Sometimes I let their will be done because they need to know that their will matters even if they don’t have the vocabulary to defend it.

But Kimani... she doesn’t know what color your cup is, whose bracelet is whose, or if you brought a tank to the battle—so unless her safety dictates otherwise—she impulsively rules her universe... and I have no inking whatsoever what to do about it. One thing I do know is that I would rather deal with Kimzilla than turn her into more of a target than she already is.

Authenticity and Vulnerability

I didn’t write that post yesterday to invite ego stroking (though I admit it was nice to hear from so many people that you give a hoot what I have to say.) I wrote it because I was really struggling with how honest and vulnerable I am willing to get in my writing. Because there are consequences that come with being authentic and sharing the real deal.

While the comments I received here and on FB were encouraging, one of them was a game changer. It came from an IRL reader who I went to grade school with. I wish she and I lived close enough for coffee dates because while she was cool in school (heh heh) she grew up to be even cooler and has had more than her fair share of grief and life experience. She directed me to a blogger named Brené Brown who writes a blog called Ordinary Courage. My friend suggested I watch a video, and I did.

That was it, that was all it took to know that I can overcome my fears (and an unhealthy dose of shame) to step off the cliff and be authentic and vulnerable. It’s not like I won’t lighten things up with a cake pop post here and there but I believe it is time for me to dig deeper into my heart and mind and let the b-side of me out of her cage.

Just promise me that if you are going to stick around for it that you will be gentle me :-) Oh, yeah and those of you who know me IRL, just pretend someone else has appropriated this blog. Deal?

It Is So Hard to Keep It Real

Last night I wrote a post about the days when I was not an ok mom (prompted by an excellent post on Gillian's blog.) It was an honest post that described my struggles to overcome rageful reactions to ordinary kid stuff that my kids do. It was the kind of post that might touch someone out there who needs to hear that she is not alone, that there is hope, and that change is possible.

But I did not end up posting it. I may never post it. In fact as I read through my posts of late (the past year or so) I wonder if I will ever post real stuff that matters ever again... because too many people I know IRL read this blog (ahem, not that you would ever know that by the comments or rather lack there of.)

I struggle as a mom. I have body image issues. I am sad about my daughter Kimani... it twists my heart and mind. I have not-so-nice but true and rather funny opinions of some people around me and in my virtual world. I am seriously no longer convinced about God. I hate being a SAHM. I miss the freedom to travel. My husband doesn’t get enough sex. I am often tired of being me now and ache to be me then. I am conflicted about abortion. You get the idea.

But if I step off the cliff and write about all that, what does it really matter and in the long run it will only hurt me. When I go to publish my nonfiction book about parenting infants with Down syndrome, people will say, "That is the same woman who writes all that awful crap on her blog." When I try to set up playdates for my kids the moms will remember what I have written here and think maybe they don’t want their kids around her kids. I have already lost much of my Christian readership and would likely lose the rest.

Why blog anymore? I don’t know. There must be a reason I still feel drawn to write the truth as I see it.

She Tries Not to Cry, She Fails

Alone in the parking lot, the loaded question he asked plays over and over in her head as she turns the key in the ignition. "I will not cry. I will not cry," she whispers into the darkness as the van’s engine purrs to life. "You knew this was a possibility," her thoughts chastise as hot droplets spill over her lashes against her will. She swings the van around in the school parking lot and lets its bright headlights lead her home.

"Have you considered keeping her where she is now?"

That is what he asked her. But what he meant was that her little girl is not even good enough for the self-contained Kindergarten room she’d fought to keep her other daughter out of.

What he wants her to do is send the girl to a private school for very special children but she is afraid. (The school is in the same center as her babygirl's current preschool.) She has seen the children who comprise that K-2nd grade classroom. She knows she is a hypocrite but her heart can’t help it.

Why can’t pre-K last forever?

Open Season

My childhood was filled with killing. There was no real season for it. The guns stayed in the truck window hanging on the rack all year long. Depending on the time of year, the dead deer were either strung up proudly in a tree at the end of our driveway, or hung secretly down in the dirt cellar. We butchered them on the kitchen table. Bones sawed and cracked through rang in my ears. The blood got on everything, and it smelled...sweet and heavy on the edge of decay.

And it wasn’t just deer. There were bloody headless chickens who ran even after they were doomed. There were turkeys soaked in pails of stinking brine whose feathers needed to be plucked out. Pluck, pluck, pluck... the perfect word for how it sounds and feels to pull a feather from a soaking wet bird carcass. There was the rabbit I saw getting skinned. My young eyes were fascinated by how his coat peeled from his body, leaving a thin layer of film to hold in his red, purple, and grey guts. “Looks like a peanut butter and jelly sandwich,” My grown step brother said staring down at his catch. The next time I opened my lunch to find the white bread faintly seeping up with grape jelly trails, I knew he was right.

And it wasn’t just things we ate. There were troublesome dogs, unwanted litters of kittens, and foxes who did not belong in our coop. There were floating bull fish after the quarter stick went ka-boom in the pond. There were unrecognizable piles of skin and bones littered throughout our woods. The deer skulls were obvious... the others I wondered about.

And it wasn’t just animals. There were two little girls who came to believe Him when he said he would tie cement blocks around their necks and throw them in the pond. Those girls grew up and got away. But I know if you go back and look into that dark and murky water you will see reflections of them lying there at the bottom.

A Fart Changes Everything

I would like to tell you that being a mom to kids with “special needs” is no big deal, not different at all than having five typical children... but then I would be lying. Not just lying to make a point (like a good politician might do) but outright plain old lying, which is what I do to myself on this particular subject most of the time.

It is different, and lots of the time it is a big deal. Take this morning for example... it was just about 7 a.m. with the bus scheduled to arrive at 7:20. Masha was eating breakfast and letting me braid her hair. Autumn was sitting next to us enjoying her sliced banana. Suddenly I smelled a terrible fart that had made a silent entrance. I knew Masha was the culprit. I asked her if she had to go poop, and she adamantly insisted, “No, babygirl toot.”

99% of the time, Masha goes on the potty. She is very good about Number Two and has only had a couple “can’t get her pants off fast enough” poopcidents, so I let it go... because if I force her to sit on the potty when she really doesn’t have to go, it is just a 10 minute crying ordeal that would likely lead to missing the bus.

At 7:16, I piled three kids into the front seat of the van and drove them down the driveway to wait for the bus. I did the face inspections, wiping away crumbs or toothpaste... and there it was again... a real silent stinker. Now we all know that there are different kinds of gas... and this kind is usually a harbinger of belly ache poo. I firmly ask, “Masha, do you have to poop?” She gets very upset, stiffening up for a fight, “No, nooooo.” Then she proceeds to blame it on her brother.

A regular mom, a typical mom, an ordinary mom would just explain to her five year old that she can go poop and then mommy can drive her to school... and then her child would admit the urge or put mommy’s mind at ease with a convincing, “I really don’t have to go.” But no so in my case. Now the stakes are higher... the bus is down at the dead end turning around... seconds away from taking them for the day, and I have to decide what to do. Do I hold her back, literally kicking and screaming, force her onto the potty and wait out her tears until she gives in and poops (if in fact she really has to)? Or do I send her to school and risk an accident there?

My stomach is churning as I give over her backpack and let her run up the bus steps. If this were Jade last year I would have been like, “Oh well, I hope it doesn’t happen but if it does, c’est la vie in Kindergarten.” But this is MASHA, and if MASHA craps her pants in class that will be a whole different story... that will be a reason to say “she is not ready for Gen Ed.” That would be a reason to say she FAILED the probationary period and has to go to the special classroom where they think pooping in your pants is par for the course.

And so as a “special needs mom”, I get to spend the day worrying about her... Wondering if she really did have to go, and if she will be able to tell them and get her pants off quick enough in a new bathroom. Yeah, for me—the SNM, a simple fart changes everything.

After school update: Masha came home in the same clothes she left in and with no note in her backpack, so I am assuming she had no potty issues today :-)

The Wrong Idea

With every pregnancy comes a preconceived idea of the child that will be. We may not even realize how powerful and ingrained that idea is, unless it is challenged. The idea is firmly grounded in the perfected combination of the mother and father. A wanted pregnancy is a pregnancy of hope.



A prenatal diagnosis of Down syndrome changes all that. Though nothing inside me was different than the day before I heard the news, everything in my mind was altered. The possibility of perfection was shattered, and I was left contemplating that even the best outcome would be subpar to a “normal” child. I hesitantly opened the yellow folder filled with xeroxed faded sheets describing what the future might look like.



Anal atresia, a flat face, heart defects, small low set ears... the flush of shame rushed through me. How could I have created this anomaly? I read a little more... and was clobbered with the worst of it, intellectual disability. My child would not be smart like me. In fact, according to the fact sheet, my baby would likely be a standard deviation or so down from the lowest point of normal human cognition.



I stuffed the papers back into the folder and closed it up. Then I put it high up on a shelf far away from me. I would not look at it again. I could not look at it again. “Que sera, sera,” I said to myself through my tears. And for the rest of my pregnancy I lived in fear of this ugly imperfect child growing inside of me.



What if I had been delivered this news early in my pregnancy, long before I could feel the baby fluttering, and long before the world could see that I was carrying? What if I had been told that my other children and my marriage would suffer because of this coming child? What if the doctor I trusted with my most womanly self had suggested that I could end this and do it over again with the odds stacked in my favor? What if the wrong idea had convinced me to take my daughter’s life?



I wish that every single woman facing this difficult decision could have a glimpse of her future. Not just of her child but of who she will become because of that child. It is a terrible thing to have knowledge without experience, fear without hope, vision without clarity. It is a terrible thing to have to make a life altering decision based on an idea, maybe even the wrong idea.

The Day I Dreaded

When the phone rang at 11:07 a.m. and the caller ID flashed “Private” on the screen, I was not surprised to hear the pediatrician’s voice saying hello. I had just been on the phone with her office to ask for vaccination info for camp forms. So although a call directly from the doctor herself was not necessary, it was not alarming.

“Hi there,” she said softly, “I need to talk to you about Masha’s lab results.”

Instantly I felt sick to my stomach and braced myself to hear her say that the CBC was bad and Masha has Leukemia.

“Remember I ordered an HIV screen because she is adopted? It came back positive.”

She continued on... explaining antibodies tests and actual virus tests... Masha’s blood had failed the virus test even though the antibody test came back negative. Could I take her into the hospital for further testing... here is the phone number... they have her records and they are waiting for her. My composure stayed steady on the phone as my brain repeated over and over, “It’s not a death sentence anymore, it’s not a death sentence anymore, it’s not a death sentence anymore.”

As an eighties girl, I was wide awake when AIDS made its public debut. Within a couple years the disease traveled from the drug and homosexual male communities into dentists’ offices and blood transfusions. We were all appropriately terrified of the mysterious disease that had no cure and eventually ended in death. Those who had AIDS or its precursor HIV became pariahs.

Before we hung up, our pediatrician gave me one small drop of hope in the words, false positive. Maybe, just maybe, this was all a big mistake. I pushed the call disconnect button and burst into tears.

It is doubtful my husband understood much of what I sobbed into his ear but the HIV part got through to him and he was home with me within a half hour. Together we cried and wondered how on earth this could be possible. She came from a wealthy family who had other children before and after her, so it is doubtful it was transferred to her perinatally. She had never been in surgery so a transfusion was unlikely. What other possibility was there... bad vaccination practices at the orphanage?

Jumbled. That is how the thoughts come in times like this. I remembered a bad bite on Masha’s back last year... the dental indentations had looked suspiciously like Kimani’s mouthful of teeth and now I worried if HIV could be transmitted through a human bite. Maybe it wasn’t Kimani who bit her... maybe I would have to tell the school and they would tell the other parents... and as if Down syndrome were not enough to get in the way of her up-and-coming social life, surely HIV would be. Who in their right mind invites Typhoid Mary to their kid’s birthday party? Kimani had meningitis, Masha has HIV, and what’s on the agenda for Autumn... Leukemia? WTF? This is why I avoided getting their labs done... this is the day I dreaded. The enemy I can’t see is the one who has had the most power to destroy my babies.

My best friend was at my house in a matter of moments after my call to her. She would babysit for us so that when Masha came home from school, her father and I could whisk her off to the hospital to meet with the infectious disease specialist. Putting her in her carseat I started crying all over again... she just seems so strong and healthy... She asked me if I was hurt and she leaned in to kiss me. It is ok to kiss her I reminded myself... HIV is not a booger disease and a little bit of runny nose or wet lips was not going to make me get it. Oh my god, I don’t want to be afraid to love on my daughter.

 

The little old lady “bug” doctor, the same one who hovered over Kimani in PICU trying to pinpoint the force that was sickening her week after week, walked into the room and said, “Well hello. I know you but who is this little one?” Introductions and explanations were made and then she reviewed Masha’s translated medical record. There it was. Anemia. The doctor explained that in some countries blood transfusions are given to anemic children.

The needle jumped up a notch... this whole time bits and pieces of information pushed the line of fear up or down on the graph in my heart. The doctor explained all of the tests given for HIV, and that there are two different strains and that Masha had actually not yet been tested for the virus itself (the needle dropped down a notch). In fact they would be drawing blood to do that test right after our meeting. The results would take a week and she herself would call us to deliver them. She took my hands in her cool, bumpy grandmotherish hands and looked me in the eyes. “Deep in my heart I think this could be a false-positive but if it is not, you must remember that it is not the end of the world for her. This is a chronic disease and we can treat it.” I felt my cheek muscle tense up and wiggle but I did not cry. I held on to those two words that might possibly erase this whole thing... false positive.

For the next couple of days I couldn’t help but remember how I'd had a similar bit of hope while pregnant with Kimani. They didn’t know for sure if she had Down syndrome, and I had held fast to the word “maybe.” And then there was the hope that the meningitis had not caused brain damage...

On Friday, Dr. L. called with the good news that Masha is fine. Her specialized blood test for the Human Immunodeficiency virus was negative. This chapter has a happy ending.

Justified

In June of 2010, two years after my daughter’s birth and subsequent heart-wrenching hospital stay, I wrote a post about how the smell of fresh cut grass triggered an uncontrollable reliving of the trauma I experienced during that time. I wondered when I would be free of this uninvited flashback into Hell.


I believed it was somehow my fault because I have never been able to force myself to throw away the stitches, tubes, and other bits and pieces of her that I saved. I have not found a way to “get over it” and heal. Therefore I concluded that I must be weak and perpetually broken. How could I not logically or emotionally separate a flower from a bruise?

Now I know how it works.

“At any juncture where the mind becomes overwhelmed and cannot take in the enormity of a tragedy and its sweeping implications, imagery of details can be frozen for future recall. That is, details can become vividly “wired in” and so represent the totality of the traumatic event. They are then intrusively and involuntarily replayed as a result of triggers, both conscious and unconscious, internal and external. Once underway, these flashbacks are usually next to impossible to interrupt. Potential triggers can be almost anything... (fresh cut grass) Flashbacks are multisensory and often include exquisitely detailed features of the scene of the moment of reckoning when life became drastically changed.” Susan Roos, Chronic Sorrow, A Living Loss.

Now I don’t fear it anymore. I just let it roll over me until it is done. And first chance I get I go hug my girl and breath in her soothing life scent.

The French Strangers - Part Two

Here is part one if you missed it.

We stood up together to make a run for it but the stranger caught me from behind. As he swung me around, he punched me in the face. His fist connected with my upper left cheek and for a few seconds everything went black with bright spots flashing. The hit should have sent me crashing to the ground but he still had a firm hold on me. Luckily, my friend was getting away because the other guy was not interested in attacking American women. He just watched.

She came back though. She rescued me. She whacked him in the face with her umbrella and got herself a massive kick to the stomach in return. It was enough to divert his attention and I scrambled backward out of his reach. Before he could decide which of us to come after, I screamed at her to run the other way and I ran out into the road.

I ran right into the path of an oncoming car, the only car on the road. It swerved, screeched to a stop, and two men got out. One of the men was the tram driver. I was hysterical. I told him over and over that a man had hurt me and I asked them “Where is my friend?” I don’t know how those men understood what I was saying in my broken, sob-filled French, but they did.

They wanted to take me to the hospital, the police station, or even home, but I kept asking them about my friend. So they drove up, down, and around the streets near the station until we found her. She (whose French was so much better than mine) explained to them what happened, and then she told them where we each lived.

You wouldn’t blame me if I packed up and flew home, especially if I told you I saw him again a couple days later on the tram, on my way to school, and he flicked his tongue at me like a snake. But as scared as I was to go out to class, I stuck it out. Eventually, I made friends and found out I was living in a French ghetto highly populated with Algerians. I learned that (back then anyway) the French and the French Algerians hated each other.

Oddly enough, it was a friendship I made with an Algerian shop keeper that kept me in France. His tiny grocery store was located on the roof plaza of the building just across from mine, accessible by a pedestrian bridge that was attached to our building a few floors below me. There was a butcher shop and a bakery over there as well, and that plaza was just about the only place I wasn’t afraid to go because I didn’t even have to go down out to the street.

The stranger who owned the grocery store was tall, well-built, with dark hair, dark eyes, and a beautiful smile. He made such an effort to befriend me, tolerating my immature French, asking me about myself in between explaining as best he could the difference between the zillion types of milk. He wanted to know if I was enjoying his country, and so I told him my tram station story.

It made him visibly angry. He brought his sister out from the back room to tell me in her broken English that he would take care of this problem for me and that I should not be afraid to go out. She said that her brother was my friend and that this meant that I would be safe anywhere in the neighborhood. She was right. I stayed in France until the following July and I never saw tram man again.

I’ve never stopped traveling, but tram man taught me quite a bit about how to do it. I’ve also never been able to kick the innate fear of strangers that most of us have but I do recognize it for what it is and find my way around it.

The French Strangers - Part One

Ever since I spent six weeks one summer partying in Montreal, I have felt that I should go everywhere I can, whenever I can, for as long as I can.

(Did I say partying? No Dad, I was learning French, studying every day, behaving myself, I pinkie swear it.)

On the 27th of September many years ago, I landed in Lyon, France with a bunch of college students from all over the US. We arrived by van in Grenoble after midnight and I was handed off to a tiny blond lady who had agreed to host me and another girl. As Madame explained the house rules to us, I realized that all those years of French class didn’t add up to much and my brain hurt terribly.

(Uh, guess I should have studied French during my immersion program in Montreal.)

On the night of October 3rd, not even a whole week into the great adventure, I was at the deserted end-of-the-line tram station, our stop, waiting for my housemate who was supposed to be on the last tram of the night. I was with another female student who lived near us and had agreed to show me how to get there and to keep me company.

On the far side of the station parking lot was a Superman kind of phone booth with a metal bench by it. I had a new fancy phone card, so I stepped inside to call my mom and wish her a happy birthday. We talked for a few minutes until the clicks cut in and a pretty French robot voice said something like “you are out of time”.

I hung up the phone and turned to exit the booth, and there he was... pinning the door shut. Medium height, slim, dark hair and eyes... the stranger I never saw approaching. His companion sat next to my friend on the bench. She looked frightened.

After a moment of grinning at me through the glass, he opened the doors, pulled me out of the booth and pushed me down on the bench. I could not understand much of what he was saying but he would not let go of my arm. His powerful grip transcended the language barrier.

My friend and I talked over them, trying to come up with a plan. There was no one else around. The last tram had come and gone, and my housemate had not been on it. The station lights had gone out and there were no cars left in the lot. The adjacent road was dark and quiet.

I remember being glad that I had just said “I love you” to my mother.

Before... and After

Before the actions of hate struck fear and then sorrow into our hearts, only one of our combined eight children (who range in age from 24 years to 22 months old and have all been to NYC) ever saw the Twin Towers in real life.



When TK was in second grade, my husband took her into NYC for a day of fun and adventure. A few months later, she started third grade and life as we knew it changed forever.

She doesn’t remember the trip, nor does she remember how our day played out on 9/11. At that time my husband and I had not yet even begun the talks about creating her younger siblings and her older half siblings lived far away and only came to visit NYC after 9/11.

This morning I made our children who live at home watch some of the 9/11 anniversary specials on t.v. They fussed, bored and antsy to get back to their cartoons and computers. They could not feel my sickened stomach as my memories flooded back. They could not feel my sadness as the victims’ family members shared their stories. For them, 9/11 is a page of a history book, as Pearl Harbor once was in my mind.

For me 9/11 made all historical accounts of war and tragedy real, tangible, things I can now truly envision and feel when I read about them or visit sites like Babi Yar. But for my children, before and after 9/11 is all the same to them, and a part of me hopes nothing ever changes that.

Baby's Got Down Syndrome, 4: She's Got My Legs

I watch her tromp across the kitchen floor after her pink ball. She has on navy blue shorty shorts and tiny boy-looking New Balance sneakers. I am captivated by the shape of her legs. Those sleek calves, rugged knees, and straight-lined thighs... How can it be that she has legs just like mine?

By the end of my pregnancy, I had so many fears about what a child with Down syndrome might be like. Surely this child would be chubby and have a flat face. Stubby limbs, a giant tongue, droopy everything... Isn’t that what the literature from the doctor’s office said?

And then I delivered a baby that looked like... a baby. She was fairy tale pretty. Three years later, that baby is gone, replaced by a little girl with my legs. But something still isn’t right. Meningitis turned her mind into a labyrinth. Words cannot escape, images are lost, neurons get rerouted. This is not the typical development of a child with Ds, is it? Specialists brushed off my concerns contributing every difference in her physiology to the extra 21st chromosome.

On blind faith we adopted two more little girls, a three year old and an infant with Down syndrome from a village orphanage in Ukraine. The moment Masha and I locked eyes, she burst into a smile and reached for me to pick her up. She then wriggled away and ran for the swingset. From there she rode a tricycle down the walkway, and then she took her baby stroller for a walk. A little while later she climbed into a real stroller parked on the porch and began strapping herself in.

Later on I found that Masha will brush my hair, try on my shoes, dress and undress herself, and sing into a pretend microphone. She puts her plate in the sink, carries her own backpack, plays soccer, and plays tricks on me. She feeds her dollies, enjoys tea parties, understands English, and picks berries with her brother Jade.

Life with Masha confirms what I have wondered about, suspected, worried about... that Kimani’s brain trauma changed everything for her. Thus it is bittersweet for me to know that children with Down syndrome are so very much like ordinary children.

Baby's Got Down Syndrome, 1: Lunch at Pizza Hut

Baby's Got Down Syndrome, 2: Crossing the NICU Styx

Baby's Got Down Syndrome, 3: Seeing in the Raw

This is the final article of a four-part series.

Regret

Before Kimani I lived a life with no regrets. It’s not like I hadn’t made big mistakes, hurt people and hurt myself, but I never yearned to go back and change anything.

Now I ache, I wish, I wonder... if only. If only I could go back and say no. No feeding tube that would eventually lead to bacterial meningitis. No CV line in her thigh, a procedure that would go awry and lead to an intense 106 degree fever and a heart rate off the charts.

Because one of those two evils stole my child.

Cortical vision impairment... the eyes can see but the brain cannot interpret... the processor is broken. Legally blind. I try to imagine her world... what it is like to see but sometimes not know what you are seeing.

Sometimes when she wakes up and is still in her crib, I know she doesn’t know I am there. She is looking right through me. I say good morning and whisper her name. She looks for me but her eyes do not find mine. I reach down and stroke her cheek and she wraps her little hands around my wrist. Ah, now she knows where I am.

But there is more to it than that. How much more? I don’t know and neither does Google. I have searched for answers, for others like us but I find nothing, no one. The results are terrifying and vast... brain damage, mental retardation... but no specifics, no list to check her off against, nothing to compare her to.

I can never go backwards, only forward, only onward. Perhaps to a pediatric neurologist who can tell me what I need to know. Maybe a fancy machine can see inside her head and tell me what is best for her.

And as for me and God, well I don’t know. I doubt he is going to tell me why, because after all, I already know why... shit happens. Maybe he will ease my regret and bring me peace, or maybe he will perform an old-fashioned miracle and heal her.

Or maybe nothing, maybe I’ll feel this way forever.

Pre-Wedding Jitters

Adopting a baby is very much like having a baby and now I think I know what guys feel like. Your body doesn’t change... you don’t feel the baby growing inside of you. You spend your days preparing for the arrival of a new little someone to love and then one day they place a bundle in your arms. Congratulations, it’s a girl.

It is a baby that knows nothing of the world, who has no loves before you, no life beyond you. A baby that can’t jump up and run off, a baby who speaks no language but that of affection and nurturing.

Adopting a child is like getting married. I remember diving in, terrified, saying I do when I wasn’t sure I could. I had never experienced a successful marriage and wasn’t sure the concept was really doable in real life.

Masha is not an infant. She has a life. She sings in Russian or maybe its Ukrainian... I don’t even know the difference. She runs away. She has a personality. She loves people I have never met. She doesn’t know me nor does she know what a mother is.

In a week or so I will “marry” her. I don’t know that she even wants to be married. It is best for her... it will change her life, but what does a three year old care about the future?

I have my dress, the invitations have been sent, the church has been rented. I am going to walk down the aisle, I am going to cry when I say I do. I know this story, I have been the bride before.

And just like the first time, I am scared.

The Open Door

I feel this poem...

Death Barged In
by Kathleen Sheeder Bonanno

In his Russian greatcoat
slamming open the door
with an unpardonable bang,
and he has been here ever since.

He changes everything,
rearranges the furniture,
his hand hovers
by the phone;
he will answer now, he says;
he will be the answer.

Tonight he sits down to dinner
at the head of the table
as we eat, mute;
later, he climbs into bed
between us.

Even as I sit here,
he stands behind me
clamping two
colossal hands on my shoulders
and bends down
and whispers to my neck,
From now on,
you write about me.

(From Slamming Open the Door by Kathleen Sheedar Bonanno. Copyright © 2009 by Kathleen Sheedar Bonanno. Used without the permission of Alice James Books and so I hope you go buy a copy so they don’t send me to prison. All rights reserved.)

She knows what I know, only she knows it better than I.

Death opened the door and I cannot get it to close all the way.

It doesn’t seem to matter that Kimani is a healthy 25 lbs. of sheer power and joy. It doesn’t matter that she has 21 signs and says things, and can almost walk. It doesn’t matter that when she eats peaches or berries or watermelon that the sweet juice bursts forth and trickles down her chin. Even her wild laughter cannot bolt the lock.

I can see him, I see the shadow he casts from that thin crack of space where the door is still slightly ajar.

“Go away,” I yell at him pushing hard against the smooth cold wood. My efforts are futile and he is nonplussed, still tossing golden coins in the air.

The B-Side of Summer

I used to love my flowers. They reminded me of summertime, carefree days and warmth. But now my brain has tangled them with imagery of my baby suffering. I can no longer disassociate this blooming flower...



from these bruised flowers.





And when the hot sun, that I used to love, beats down on me I think of how her mouth and nose looked when I would come back in the mornings. No mercy from the imaginary sun that dried her lips into rock candy and caused her nose to bleed.





The smell of fresh cut grass tells me that today there may be some skin missing or an infection brewing.





As I watch the ants coming and going, all over their little hills,



I see the needle pricks. Once, after her surgery, I counted 47 holes in her wrists and upper inner thighs... and then I stopped counting. With nothing left to hit on the outsides, it went in under her armpit.





I debate whether I should destroy the pictures and burn her accoutrements. Will summertime return to me anew if I do?



Maybe you should talk to someone my husband says. That is why I write, I say.

Can a Broken Heart Forget?

Two years ago last Friday she came and rocked my world. I had already been around the block a time or two. Lived through parents’ divorces, beloved boyfriends cohorting with best friends, surgeries, and plenty of bad news. But as Hillary Johnson put it, I had never really learned to cry.

Oh, but I did learn how then. I learned that nothing, nothing hurts like losing a child. In the end, as you know, we got to keep her. But there is this little part of my heart that doesn’t believe it, that can’t trust it, that won’t let me forget.