Where Are Your Reindeer?

You all know how I tell my kids the truth that there is no Santa right? Well apparently I wasn’t quite so clear about it.

Last night while we were getting ready to take our annual drive through the lights in the park which culminates in a visit with Santa, I reminded the boys that there was no need to tell anybody there that Santa is really mommy. Jade gave me the interrogating eye and said, "Mommy how can you get all around the world with no reindeer?" "Um, I am just your Santa. All children have their own people who bring them gifts. There is no real Santa that has reindeer and delivers presents to everybody." Jade responded, "I don’t believe you."

Who the heck does he believe? The t.v.? The kids at school? The guy dressed up in the park playhouse? Whatever.

So here are the results of our crazy visit with Santa. By the way, I sat on his lap too and told him I have been good, and asked him for a nanny.



Can you tell my Irish twins (Masha and Jade) are a complete and total handful?

Can you guess who wanted nothing to do with Santa?


Merry Christmas to you all!

The Wrecker

That is one of Kimani’s nicknames. Two others are The Cobra and Kimzilla. She is our Master of Disaster.



Kimani has grown just tall enough to reach the burners on the stove, and everything on the kitchen counters. Her favorite pastime is throwing things. Bad combination. She is strong enough and agile enough to climb up on the tables, and “wipe” them clean.

She is very picky about the way she will accept food. She wants to hold it, to touch it, put it in her mouth and take it out. Give her anything more than a bite, and it will end up tossed across the room. Not enough and she will ream you out.

She loves to spin. She will twirl around and around and around until I am dizzy watching her. Spin, stomp the foot, spin, stomp the foot. She will twirl on the floor, or spin on the table. Round and round she goes, never falling.



Some days I worry about what might become of The Wrecker...

But everybody is gifted you know, and she is no exception. Here is a list of some cool jobs Kimani might grow up to do.

Penguin Feeder at the Aquarium
She is perfect for this job. She can whip handfuls of food like nobody’s business. And unlike lots of people, she isn’t selfish so she won’t mind giving the penguins their fair share.

Product Tester
Ever see the commercials for the Gyro bowl? Its feature list boasts that it is kid-proof and virtually indestructible. Ha ha, right. They should have had Kimani test it out for them. It took her about two seconds to spill cheerios out of it, and another two seconds to break it. (Granted we could fix it but not until after she made a mess of the contents.) Now, the bright blue shell we put on the back of her iPad? Yeah, that is indestructible, so far anyway.

Artisan Butter & Wine Maker
All that twirling and never getting dizzy? Scrub her up and drop her in a tub of cream or grapes and let her go at it. Soon you will have delicious sweet butter, or plenty of juice for a batch of fine Merlot.

Childproofing Consultant
Worried that you haven’t prepared your house well enough for that new baby? Call Kimani. She will come to your house and locate every single thing that can still be dangerous. She will find the outlet you missed and every single cord you thought was hidden. She will tear down the full-length curtains you forgot were inviting to tiny hands. She will knock over anything not firmly attached. And, for the mere price of a latte, she will help you determine if coffee stains will come off your ceiling.

Demolition Set Grip
Imagine you are filming a movie. There is a mansion with a spacious, immaculate living room and you need to have it look like some bad kids threw a wild party while their parents were away. Kimani to the rescue. She is quick and efficient, and with the proper tools could easily make the place look burglarized if that were your preference.

Personal Boxing Trainer
Think you are ready to get in the ring with one of the Klitschko brothers? You’re not. Not yet. Not until you hire Kimani to hang out with you. She will teach you how to dodge and duck. Take your eye off her for a second and she’ll pop you in the head with her iPad, or grab your drink and whip it, or toss an oversized bucket of pretzels in your face. Turn your back on her and she just might bite you on your bottom.

The Wrecker, The Cobra, Kimzilla, call her what you will, but never ever underestimate her talents. Can you think of a great career for Kimani that I left out? Leave it in the comments. The best entry will win an afternoon babysitting her, bwaa ha ha ha!

In Her Eye

I have written about how beautiful, and how elusive Kimani’s eyes are. In the comments, llbarkat wished to see. If only capturing her eyes was as simple as a wish.

I’d settle for getting a close-up shot of just one of them.



Yesterday afternoon, I caught her sitting on the kitchen table, basking in sunlight, munching on dirt from my cactus planter. She was peacefully staring down at the table. I ran for the camera. When I looked through the shots I had taken, I saw the one above. At one hundred percent, I could see the reflection of the table in her eye, and looking closer I thought I saw a miniature her sitting on that table.

What's It to Ya?

Many people find this blog by searching for a mentally retarded baby. If you google that term in images, Kimani comes up near the top of the list. The post you land on is “It Wasn’t Meant that Way.”



I am such a curious woman. I wonder about all the reasons a person might be searching for an image of someone like Kimani. Maybe you are a pregnant mom who just got some scary news. Maybe you are a college student doing a research paper. Maybe you are someone searching for nefarious reasons.

Whatever brought you here, I hope you gain something positive about mentally challenged people.

My daughter Kimani has Down syndrome. She is three years old now. As an infant in the NICU she contracted meningitis and suffered brain damage resulting in cortical sensory impairment. What that means is that while her senses (sight, hearing, feeling, etc.) all work correctly, the cortex in her brain does not always properly process the information it receives. At times she is legally blind, or deaf, or unable to feel things. It also means she processes information quite slowly when she is stressed or tired.



As you can imagine being sometimes blind and deaf and running on less neurons can make learning difficult. It can also make day-to-day living kinda frustrating for her and for us.

There is a huge difference between a person with Down syndrome and a person who has suffered brain damage. Apart from my Kimani’s unique and gorgeous face, which gives a hint of that extra 21st chromosome, she does not represent a typical child with Down syndrome. I have two adopted daughters who both also have Down syndrome and they are similar to each other in development and very much like my two typical children who have just 46 chromosomes.

Although Kimani has difficultly with learning and retaining new things, she can walk and climb. She can say a few words and can sign a few more. She is cooperative with getting dressed and other similar activities. She transitions well from one thing to another, sleeps like an angel, and is doing well with potty training. She loves the pool, her iPad, and dancing around in my arms to 70’s disco music.



If you take some time to read around this blog you will encounter the power Kimani has wielded in my life, and how that power has infused me with renewed creativity, brought me emotionally to my knees, taught me new ways to value individuals, and whispered love secrets into my heart. You will also find lots of other beautiful pictures of Kimani.

I invite you to share with me what it was you were looking for and if you found it. I accept anonymous comments if you wish to remain private.

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.

Is Kimani a Real Girl?

Dr. Logan Levkoff wrote a post, “The True Meaning of Womanhood.” Daring soul. She took a good stab at it, but her conclusion that Michele Bachmann and Sarah Palin represent the “wrong” definition of woman, which seemed to be the real reason for the article, annoyed me and thus sparked my brain cells, forcing me to consider what really makes a woman, a woman.

I have to question some of Dr. Levkoff’s points. She asks, “Is womanhood measured in degrees? Are there some women who are ‘more woman’ than others?” and then answers herself with a firm, “No, of course not.” Immediately following she defines being a woman as “a state of mind and a commitment to social action.”

If that were the actual definition of womanhood, the true meaning of womanhood, then either we all have the same state of mind and are all equally committed to social action, or womanhood can be measured in degrees. Oops Dr. Levkoff.

One reason she needs to define it that way (“I think I am, therefore I am” and “I agree with Dr. Levkoff’s political views, therefore I am”) is to open the door to transgendered women. (A transgendered person is someone whose gender identity is different from their assigned sex at birth.)

She correctly makes clear that a woman is not simply the sum of her physical parts. She points out that a woman who has a mastectomy is no less a woman after, and I agree. Seeing how we have objectified and sexualized women based on a body image, I get why she wants to toss boobs to the wind, but I can’t let her.

Because according to Dr. Levkoff, Kimani might not qualify as a girl. After all, Kimani may never even understand that she is a “woman,” as her state of mind is limited. Kimani will doubtfully be committed to any social action. Rather than losing her girl parts to cancer, Kimani has lost her mind parts to meningitis, but this makes her no less a girl who will grow up to be a woman.

Dr. Levkoff’s true meaning of womanhood is flawed because the scope is too narrow, her political mission too obvious. When defining womanhood, you cannot separate the physical and the metaphysical and exclude either one or the other. The true meaning of womanhood is complex and vast, but I promise you there is a place for Kimani within 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.

I Don’t Wanna Be an Independent

Really, I don’t. I want an issue, something I can glom onto and vote with no matter what else is at stake. I want to be so prolife that I have to vote Republican no matter what, or so pro-LGBT that I vote Democrat no matter what. I want to not have to think about who is running for President and what his or her ideas are.

Because when I think too long about various issues, I am a flip-flopper. After a couple debates, I am a Newt supporter. He just sounds so fair, so smart, so experienced, so full of good ideas to get this country back on track (were we ever on track?) But then, Obama goes to Kansas and delivers one of his first real campaign speeches, and boom, I remember why I voted for him last time.

Obama has such good speech writers, such good spinners, and he is such a good storyteller. I was goo-goo eyed watching him as he talked up his “American values” and “middle class fair-playing field” vision. My husband saw me transfixed and said, “Oh no, you’re not going to vote for him again, are you?” I might.

Imagine that “truth is not about getting it right or representing reality, but is part of a social practice and language that serves our purposes during a particular time period” (David Donaldson) or that “knowledge is produced through operations of power and therefore changes fundamentally during different time periods.” (Michel Foucault) Imagine that the truth, the reality of your time period, is not absolute, not based on empirical evidence or facts, but is rather determined by the narratives that are created to record it. The story becomes the “truth”. And right now there are a lot of ways to tell the story of our country.

(All you postmodern philosophers and critical theorists, hush... I know I simplified it. How could I not?)

When the gay, high-profile, nationally syndicated, sex columnist Dan Savage categorized my daughter as a “tard,” I felt angry at him and his readers who didn’t call him out on it, and thought “Who cares if you can’t marry your boyfriend? Why should I use my vote to help you out when you don’t give equal respect to people with Down syndrome?” But then I remembered that I do want equal rights for everybody, which includes even certain hypocritical gay men.

When a presidential candidate starts talking about overturning Roe vs. Wade, my “no way” buzzer goes off and I want to cross him or her off my list. But ending mid to late term abortions for any reason other than to save the mother’s life is worth my vote.

Really though, social issues can’t compete for my vote when we’re facing 15 trillion in national debt; we borrow 40 cents of every dollar we spend; we bail out banks and the auto industry, home owners, and possibly student loan holders; we refuse to get off the Arab oil tit... when the cost of living is rising and the paycheck and benefits are shrinking... then I have to think, think, think.

Whose version of the story is closest to the “truth”? Whose vision for the future will get us back on prosperous ground? I just don’t know. Do you?

Can Anybody Tell Me...

1. To what degree a government can provide services to 100% of its people, and to what percent it can tax the income of its working people to pay for these services, before it has to change its name from Capitalist to Socialist?

2. Why shouldn’t capital gains be taxed at a hefty rate?

3. Why we are still fighting over abortion? Before you answer, consider this... I have a friend who is newly pregnant. She is frightened. Her IUD failed. She and her husband have no money and already have 5 children. He works and she gave up her job to stay home with a medically fragile child. Without charitable support, her only options are abortion or adoption. Wouldn’t it be great if this troubled mother could avoid turing to social programs because some pro-life family or families decided to adopt her and her family. Let me know if you’re interested.

4. Who believes that complete de-regulation would not result in massive environmental and food supply pollution, financial rip-offs, and dangerous working conditions?

5. Where do you draw the line between a social safety net and a social hammock?

6. Why are we still fighting over same-sex marriage? (Some of my favorite people are... OMG, don’t say it!!!!!! gay. I do not believe their relationships are in any way negatively affecting my life or the lives of my children. And I don’t think they can do any more damage to the institution of marriage than we hetros have already done.)

7. What annual pre-tax income for a family of 4 would you consider to be rich? Now I know where you live, or rather where our imaginary family lives, makes a difference so go ahead and use your own region.

8. What is the highest percentage of combined Federal and State income taxes that you would consider fair for any working person to pay?

9. Why are we allowing American companies to take their resources and new jobs overseas without penalty?

10. Where is all the lottery income going? (Wasn’t it supposed to fund school budgets?)

11. Who watched the GOP debate in Vegas and wasn’t left awestruck by the lack of decent leadership available for us to choose from?

12. Does anyone truly believe that Obama won’t wipe the floor with Romney’s suave grin during the debates if Romney is selected as the GOP nominee?

13. And, just to make this a baker’s dozen, would you pay $16 for a breakfast muffin?

I am honestly interested in your answers to any or all of the questions. But please keep the discourse polite... we hear enough political nastiness on MSNBC and FOX News.

A GOP Nominee of Our Own

With the glasses and the ponytail, I think she looks like her. She's stubborn, opinionated, and well-spoken like her. Could it be that I am raising SP’s mini-me?





(My husband says, “Nope.” ... said he sees no resemblance at all. Really?

Crushing on Nietzsche

“Convictions are more dangerous enemies of truth than lies” -- Nietzsche.

TK and I were driving back from the mall today and she wondered aloud why “Satanists” would choose to be Satanists. “After all,” she mused, “Satan only exists if you believe in God, and if you believe in the existence of God, why would you choose the loser?”

Then she rambled on that maybe you would choose Satan if you believed that stupid Italian poet who wrote about the seven circles of Hell where people get to pig out and have sex all the time.

I opened the window, poked my head out, and yelled up into the air, “Did you hear that, Dante? She called you stupid!”

“Well don’t you think he was?” She asked.

“I think you need to read The Inferno,” I replied.

Then I expounded on Dante’s brilliance all the rest of the way home. I promised to fish out The Inferno for her which is how I found myself in the garage digging through boxes of my books, stumbling upon Nietzsche’s Human, All Too Human...

I abandoned my search for Dante (there are a lot of boxes out there, let me tell ya) and offered her the Nietzsche book as an entertaining substitute for now. She opened it up and read me the quote above. “What does he mean?” she asked me.

As I explained my take on his words, yesterday’s post came to mind. Oh yes, our convictions certainly are more deadly to the Truth than any simple lie could ever be. Lies are easy for the Christian to see through, but our convictions can twist the path to the Truth, our convictions can lead us to hurt each other, and our convictions can turn people away from God.

(Note: There are actually nine circles in Dante’s poetic vision of Hell... perhaps she had it confused with the seven deadly sins...)

"Fuk Off & Pray"

That’s how he signed his FB note to me. (Are you not allowed to spell fuck correctly on FB?) I laughed when I read it, such an odd combination of commands... but I wasn’t surprised or fazed in the least. After all, he hates me and God, and I have known this for the last 15 years because he is very obvious about it. Our connection in life is that we are both TK’s step-parents.

That line solidified some thoughts I have been struggling with for some time now. I have a hard time forgiving Christians, and I realized, in those words, partially why this is. I expect Christians to act like... well... my preconceived notions of Christians, and when they don’t, I am not just hurt or angry but also hardened against them. (Um, yes, I know this is very unChristian of me.) When a declared God-hater is aggressive and hurtful toward me, I find it easy to let it roll off because I expect that from him. But I assume Christians pray when they have things to consider and when they hand me a “fuk off” attitude, I am thinking that there is no way God told them to do that, so either a. They forgot to pray or b. They forgot to wait for a reply.

I wrote a while ago about a crisis of belief I experienced when we returned from Ukraine with our newly adopted daughters. There were so many complicated factors behind that period of suspended belief... personal ones, and public ones. My husband and I had been involved with our church for 9 years, and the relationship was souring leaving him cold and me heartbroken. Before this church, we had attended a different, very small, church for about 7 years. The more involved we became with church number one, the more blemishes we saw... policy rivalries, clicks, gossiping, pressures to take a side... we started shopping around for a new church. I naively thought that the issue of having issues was unique to that first church.

It was not. Humans are human, and by last October that realization was dawning brightly in my mind. (Might I say here that I am the first to admit that I am not the role-model Christian and part of why this blog started off anonymously was so that I could explore my weaknesses publicly in private, or rather privately in a public space.)

When Kimani was born, everything changed for me. God took me places I did not want to go. “Yea, though I walk through the valley of the shadow of death...” (Psa 23:4) By that time I was already working for the church, and a shadow was just beginning to rise. Christians I looked up to and respected visited or chose not to visit for reasons unrelated to why I was actually sitting in the NICU. Work-related commitments and agreements made to and with me were broken and I had no strength or drive to care.

And like the stock market crash of that summer, things never went back to the way they were, and the seeds of anger and disillusionment took root deep in my heart. I confess, I let them grow. Because I have a hard time forgiving Christians. “Fuk off & pray”... that message encompasses what I have felt for three years now. I heard it behind closed doors in meetings of all sizes, and I saw it rolled out in how we approach our congregation and in our expectations of how they should desire to interact with us.

Now to be fair, I firmly believe that our pastor is one of the greatest preachers of our time. I am convinced that our elders make prayerful choices. I know that one of our long-term leaders is one of the most “Christian” Christians I have ever known.

However, men like that don’t a mega-church make and when your growth numbers don’t match your goals, you need a different kind of man to get the job done. And thanks to that and one of my least favorite bippity-boppity-boo-God-hates-you associates, I will remember to pray before I "tell" someone to “fuk off” and I will remember to ask others to pray for and about me before they "tell" me to “fuk off”.

As for that forgiveness issue I have? Yeah, I’ll work on that and when you think of me, pray that God moves my heart in this area.

(When writing this post, I may have chosen option c. Don’t pray about it because who wants God to interfere with their imperfect and ugly human emotions? No really, I did run it by Him quickly and my computer did not spontaneously combust, so here it is.)

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.

"Mommy, You Forgot..."

Let me set the stage for this one...

It is early Monday morning. The rain is coming down and I have four children to get up and ready for school and camp. At 8:10 my boys have to be over at the middle school to catch a bus that takes them up the mountain to Swamp camp, and my girls have to be waiting at home for the bus that takes them to school. My husband is in Michigan and my mom is unavailable to help so my best girlfriend is at my house to stay with the girls while I drive the boys to the bus.

This is my first attempt at getting four children ready by 8:00 am to leave the house for the day. I am packing lunches, doing ponytails, putting on sneakers... We are all ready to go on time and I think I have it all under control.

I drive like a mad woman to the middle school since this is the first day and who knows if the bus will be early. There are several minivans in the school parking lot and no bus yet, so I breathe a sigh of relief.

And then Jade pipes up from the backseat, “Mommy, you forgot that I have to go poo-poo when I get up in the morning.”

OMG, seriously? Instant panic attack.

He continues, “You also forgot that I go pee too.” I have a good excuse for this one. His pull-up was soaked when I got him up and I asked him if he needed to pee more and he said no. So much for taking the word of a four year old.

“Do you think you can hold it for a little while until the bus gets you to camp?”

“No mommy, I have to go poop NOW.”

There is a chance the school is unlocked and that I might locate a bathroom and get this done before the bus comes and goes... but that is doubtful. I explain to Jade that maybe for today he will come back home with me and start camp tomorrow.

He starts freaking out and I am afraid he is going to poo his pants right then and there.

Then I remember a hilarious story my mom told me about having to poo in a bag while waiting in a parking lot to board a deep sea fishing boat. I grab the tube of Wet Ones and hop in the back of the van. Surely somewhere in this mess there is a suitable bag.

We start off by just peeing in a cup, which fills up way more than I expected causing a second wave panic attack. A half inch from the top, he stops. Whew. And then, yup, I had him poop in a paper bag. Just after he was all set back in his seat, the bus pulled up.

Tomorrow I promise I will remember to put Jade on the potty whether he says he has to go or not.

Dresses

The only things prettier than little girl dresses are little girls in little girl dresses.

The Princess and the Poo Poo Treats

I spend an impressive amount of time in front of the potty trying to convince little girls to go poo-poo. So much time that it finally occurred to me that it would be worth my while to go the route of poo-poo treats. I filled a plastic container with m&ms and put it up in a cabinet just outside the bathroom. Two m&ms for every successful trip to the potty.

Yesterday while Kimani was on the potty I found that we were out of m&ms (that post would be titled, The Pirates and the Poo Poo Treats.) So I offered her a cookie instead. While I was trying to bribe her with a cookie, my mom was offering to go buy m&ms and...



And then it happened. She signed cookie. SHE SIGNED COOKIE!!! She has never signed cookie before. In fact, she has not signed anything new in over a year, and during this past year she has hardly signed anything other than More.

I felt like crying. It has been hard watching her lose what little words and signs she had by age two. It has been so scary wondering if her cognitive development had stopped.

But over the last few weeks something strange and wonderful has been going on. I have noticed changes. She is focusing more. She is starting to engage in pretend play with her doll. She is being more cooperative. She is understanding more of what is being said around her, evident in her reaching for and putting on a bib when she heard my mom say that it was snack time. She finally knows that there are gifts inside the wrapping paper...



At first I could not believe what I was noticing. Coincidence, I told myself. But yesterday she signed cookie, and now I know that her brain is building new synapses, and strengthening what was left behind by the meningitis. I feel like God is giving her back to me one neurotransmitter connection at a time.

Get Outta the Trunk

Have you been following the Casey Anthony trial? Even if you weren’t interested, it was hard to miss. But I was interested. I was fascinated. I was right there in the trunk every night following it on Fox News.

It is difficult to believe that small missteps in the investigation allowed what seems like a murder to become a possible accident... reasonable doubt. One of the nights during the trial, there was a forensic consultant on t.v. saying that the prosecution should have tested the flies and maggots in the trunk of Casey's car to see if they had been feeding on little Caylee's dead body. Her DNA would show up in their teensy bug bellies if that were the case.

There were flies and maggots in the trunk of Casey’s car? Hellooooo, I have three year old french fries in the back of my van, along with an assortment of other “leftovers”, but no flies or maggots. I suppose bugs don’t prove a cause of death but they sure do signal that something grosser than a trip to MacDonald's went down.

At the very least the girl is guilty of more than just lying. And everybody knows it. And everybody also knows that she is not only getting away with it, but she is going to profit from it big time. She wouldn’t even dare take the oath and speak on behalf of her drowning story, and yet her lawyer has already hired a hot shot NY agent to help set up the most lucrative talk show deals. Who knows, maybe there will be a book or a movie forthcoming. Then she’ll be all set for the bella vita.

Or maybe not... maybe we could all get out of the trunk of Casey’s car. We could stop ourselves from acting like the maggots who gorged themselves on that rotting baby. We could boycott any shows Casey appears on. We could refuse to purchase any magazines that print her paid story. We could use our collective purchasing power to stop Casey from getting rich off her daughter’s tragic death.

Loving My Girl

I told you she is beautiful :-)

There Is No God

Just like that it came into my head one morning last October, “There is no God.”

It was a weekday morning, a Monday or Wednesday or Friday... I was running late getting Jade to preschool. All of the little ones were packed into the van, ready to go. All except Kimani who was refusing to be strapped into her carseat.

We had just returned from seven weeks in Ukraine. After our long absence, we brought home with us two strange children. Kimani’s response to this was to refuse to be “put” into anything. She would not sit in her highchair. She would not go in her beloved jumperoo, and she would not allow herself to be put in her carseat.

I joke around that changing Kimani’s diaper is like wrestling a crocodile, “Krikey, she almost took my arm off. Ayyye, she’s a beauty.” But for real, when Kimani fights you, you lose. Ok, so we could forgo the highchair and jumperoo, but the carseat was non-optional.

Kimani was thrashing around, stiff-legging, back-arching, screeching... I would get her body bent into position and she would shove off from the seatback, jetting herself up... She rolled to the side, she swung at me, scratched me, bit me... and then, crack! I slapped her.

She froze. Silenced, she slumped into her chair. She did not cry. Instead her face stretched long and her bottom lip jutted out. Her sightless eyes bore through me, surprised and questioning. Her silky cream skin turned pink where my hand landed. That is when I heard it loud and very clear, “There is no God.”

For a decade or so I had sought Him out. I read, I listened, I studied, I prayed. I gave up drugs, voodoo, and hating the world. As my beliefs strengthened, I left my corporate job and went to work for the church. I joined a small group. I started a blog and wrote about God. I was obedient and got baptized, accepted my special needs daughter, and then adopted two more. I had done all I could to be close to God.

And there I was, godless... a rotten mother who had just slapped her mentally retarded two year old. For me there was no other explanation... nothing other than I was alone in this world, alone with my faults and weaknesses, alone with my impatience and anger. Alone with my black heart. Alone without my faith.

I was pretty sure that nothing could change my mind about this. Yet in November a friend suggested that I spend some quality time with God. I was on a retreat and had the time to myself so I opened up the hotel desk drawer and pulled out Gideon’s Bible. I couldn’t remember where I had left off in Isaiah, so I skipped ahead to Jeremiah. And the message was, “O my sinful child, come home to me again, for I am merciful; I will not be forever angry with you.” Jer 3:12

I was moved but not convinced. Back then, I had expected to feel a blessing of some sort, maybe have my secret prayers to be a better person answered. And a guilt trip through Jeremiah wasn’t going to fix everything.

Then at Christmas, I asked for what I thought would be impossible. I asked the God I was no longer sure about to give Anya a family. I knew Anya was a hard sell. She wasn’t photogenic like so many children with Ds. She was not as advanced as the others... No one had ever asked about her and her time in the babyhouse was up.

When the Haddicks stepped up to adopt Anya shortly after Christmas, I was overwhelmed. And just like that I heard it loud and clearly, “Yes, TUC, there is a God.”


(The Haddicks are over in Ukraine right now getting their girl. Check out their exciting story.)

Lifesavers

My seventeen year old stepdaughter walked into the kitchen to where I was sitting at the table working on the computer and said, “I hope I’m not pregnant.”

Open mouth to answer, stop, think... reply, “Um, why?”

(Y’all are impressed with my amazing mothering skills demonstrated by that well thought out response, aren’t you?)

She went on to explain that if she was pregnant everyone would forever think she married her boyfriend because of that reason and not because they really wanted to be married. Did I understand that, she wanted to know.

Yup, I did. “It’s like me and Kimani,” I said. She is here and nobody really knows if I wanted her to be here.

TK was stunned at the possibility that I may have not wanted Kimani to be here, “Well you didn’t abort her and you had the choice, so that shows you wanted her.”

“Is an abortion at 22 weeks pregnant really an option?” I asked her playing the devil's advocate.

She wasn’t looking too good. “Well, you adopted two more just like her, so obviously you wanted her.” She insisted.

Ahhh, there it is, voiced by an unworldly inexperienced teenager. The proof of my love for Kimani, evident for all to see.

I knew this thought was germinating. I’d been feeling the tiniest twinge of reckoning every time I announced to someone that Masha and Peach are adopted. I see it in your faces, your reactions... so different from when you heard my daughter was born with Down syndrome. There is no more pity, just awe and compliments.

TK had stuck her pointing finger right into a murky spot in my heart. Did I adopt Masha and Peach as a way to show the world that Kimani is good and valuable, and worth the air she breathes?

If you asked me that before I adopted them, while we were still thinking of adopting, still pushing papers, I would have told you “No, we are simply saving two lives.” But now, I don’t know. Maybe there was a part of me that knew that bringing the girls home would answer all those unasked questions. In a way, saving their lives is the statement that saves Kimani’s.

Retake?

School pictures came home the other day. I was digging in Masha’s backpack for her daily report and I spotted the package. There she was, so beautiful in her red plaid dress... the perfect preschooler photo.

I knew there would be a similar package in Kimani’s school bag. I tried not to get my hopes up. It takes a thousand shots of Kimani to get a good one... I slipped the thin grey 8 by 10 envelope out of her bag, cellophane side down... With a final wish, I flipped it over, and my heart crunched tight.

“Retake!” was my initial painful reaction. My gut hurt. Why couldn’t she look more... why couldn’t she look less... Why did I have to feel so damn disappointed? I wanted to send it back.

Masha and Kimani are opposites when it comes to the camera. Masha is a pretty girl and that prettiness elevates to lovely when frozen in a snapshot. Kimani is a beautiful child... dainty, fair, with plush rosy lips and ocean blue eyes. Her cheekbones are high and she has a perfect kitten nose. Her wispy hair frames her face with a golden softness.

And like so much about Kimani, her absolute beauty cannot be stilled and captured. But evidently her delightful laughter can be and I won’t be trading that in anytime soon.

Enigma

I love puzzles, hidden meanings, and riddles. I have a strong desire to figure things out, to uncover reasons and investigate results. I like secrets, and I can keep them safe.

And so perhaps Kimani is the perfect child for me.

She sees, but she doesn’t. She is beautiful, but she is a deviation. She is simple, yet a conundrum. Her skin still smells like it did on the day she was born. She mystifies me, stupefies me, and terrifies me.

Everything between us takes place on her terms. She shifts the lines on a whim. Any despotism on my part is matched with wild resistance. Her love for me is intense, and when she wants to express it, nothing can stand in its way. A hard earned smile from her enchants me.

I study her, memorize her, deconstruct her, analyze her... I try desperately to read her mind. Training her is like walking a tightrope, it exhausts my sense of balance. She makes me wonder. She makes me cry. She delights and inspires me.

She is my enigma.