Drama 101

One of my best girlfriends is a Taylor Hicks fan. She is single, no kids, and well-resourced which positions her to be a very good fan (not to mention the fact that she is a type-A personality and rocks everything she sets out to do). After all these years she is pretty deeply rooted in the “fandom”. And let me tell you, there is serious drama therein.

I have always thought her drama stories were funny, even the ones that pissed her off. (Ok, at this moment my phone starts ringing and I get reamed out by said best friend ;-) Because I always thought drama was a waste of time.

But for the last couple months it has been me dumping my stories on her.

Usually I ignore drama, and if something annoys me I write about it in my own subtle way, like a couple years ago when a particular blogger wrote a birth story that went viral. She claimed to be over her child’s diagnosis overnight. She subsequently wrote a few posts that seemed dismissive of the community. But based on the undertow of her posts and her presentation during interviews, I wasn’t completely sold on the picture she was painting (or should I say photographing). So I wrote about how it made me feel, and that was that.

But recently there was a new children’s story published. I did not like the message it promoted about Down syndrome. I stood up for my daughters by writing a joint letter to the author, as well as a private letter to the author.

And then there popped up a blogger who is bent on publicity. He has worked very, very hard and relentlessly to promote his blog. And, finally when the right opportunity presented itself, he jumped on board and hit the news circuit. Some things he said in interviews were offensive to the community. I wrote to him privately and shared my thoughts, concerns, and unsolicited advice with him.

But not everybody chooses to deal with their feelings and concerns privately, and that is ok. So lately the blogs and FB have been abuzz with pro/con this one or that one posts. And that’s ok too. What isn’t ok (to me) is the backlash in the comments.

The comments... filled with sarcasm, bitterness, anger, frustration, defensiveness, and denial. I want to say I am shocked, but I am not. Even the nicest, most levelheaded, most Christian, most thoughtful, most whatever people tend to let their worst side out in the anonymous world of the Internet.

Rather than sharing my opinion of this blogger or that writer, I will ask myself, what is the common thread that has so many people I like and respect bothered (including me)?

I think I know what it is. Each of these people I mentioned has stepped up and taken a very public role in the Down syndrome community. Each one of them is making money off that role. Each one of them is spreading their message far and wide. But the problem is that it is just that, their message. Not my message, not my daughters, not my way. They are not the Lorax and they don’t speak for the trees, know what I mean? But the outside world perceives them as if they do.

Some people are ok with that, as in “any good press” is a good thing, no matter the message or the source. Others are more discerning and although they want the good press, they want more so to take those rare opportunities to spread an advocacy message that really does reflect and include the whole community.

What I have learned from all this? That I owe my girlfriend an apology for secretly believing that adult drama was found only in the Tayor fandom.

Fear Me

I am the one who wanted you.

I am the one who dreamt of you in secret.

I am the one who made sweet love in the hope that you would be the result.

I am the one who knew you first.

I am the one who announced you with delight.

I am the one who nourished you deep within my body.



I am the one who feels filled with strange.

I am the one who considers you, and finds you wanting.

I am the one who hides my shame behind false words.

I am the one whose heart you are breaking.

I am the one who will sentence you to death.

--------------------------------------------

Imagine that? It could have turned out that way. It was my choice.

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.