She Kissed Me

The first kiss... an unusual milestone to record. I don’t see a sticker for it in the baby calendar and yet I have faint memories of all my other babies kissing me sometime in that first year. Looking back I see that I never wrote it down in their baby books. I suppose that without prompting, I took it for granted.

I have been kissing Kimani since the day she was born. I can’t help myself. She is silky-skinned and delicious. For the most part she does not tolerate my advances. She turns her head, pushes me away, squeals “Nooo, noooo.” I have stopped taking it personally, maybe even stopped yearning for her to let me. But I have not stopped doing it... pressing my lips into her bare skin.

I haven’t stopped asking for kisses either. It is not like I beg everyday or anything but I do make it a point to request a kiss from her now and again. The answer is always no. That refusal hurts worse than most anything else in my world right now.

What is a kiss anyway? An expression, a communication, a message... a simple act that represents something else. The gesture is lost on her as are most things that come in disguise.

Autumn kisses me everyday, whenever she can, all day long. When I lift her out of her crib, smackeroo... she plants one on me. While she is sitting on the potty she leans in and “Muah” gets me. When I enter a room, whoosh... she blows one to me. I remember when they handed Autumn to me in that little office space of baby house 1 in Vorzel... I pulled her close and kissed the side of her face. Though she did not kiss me back, she has been making up for it ever since she figured out what kisses are for.

Truth be told though, a thousand baby kisses cannot make up for one Kimani kiss, one simple kiss that would mean so much.



On Friday, March 30th, in the late afternoon, I stood next to the kitchen table with my husband. We were looking at something I can’t even recall when I felt a tug from behind on my shirt. Kimani was in her highchair and she was pulling at me, with both hands. I turned toward her and leaned down a little to see what she wanted. She reached up and grabbed a fistful of my hair and then yanked me down close to her. Then she opened her mouth and tipped her face up to me. She kissed me... not once but twice.

She kissed me. She kissed me. She kissed me. She kissed me. Like a teenager swept away by love’s first touch, I hooted and hollered it, “She kissed me, did you see that? She kissed me!”

My God, I am so thankful... she kissed me.

Our Only Begotten Daughter

Like the aligning of distant planets prior to a cosmic event, bits and pieces of a revelation concerning Kimani line up inside my head.

For a long, long time I have wanted to know for what purpose it serves God to have allowed Kimani to get meningitis. There is no answer that satisfies. And since those cursed days of July 2008, I wander... lost in sorrow and anger.

Recently I heard an interview with musician Jeremy Camp where he talks about his wife’s attitude toward her terminal cancer. He recounts that she said, “If my situation brings one person to God, then it is all worth it.” The bitter voice inside my head replied, “Yeah, but would you say that if it was your child?”

I couldn’t.

The interview left me with that sole thought... what about when its your child instead of you. What Christian can answer me that?

Holding the book One Thousand Giftsin my hands, I read Ann Voskamp’s initial answer, “No, God, Your plans are a gutted, bleeding mess and I didn’t sign up for this and You really thought I’d go for this?” and a tear splashes down darkening a small spot on the page. I have been saying that very thing to God.

I have been saying no. I have been screaming NO! I have taken a stance, “No God, there is nothing, no reason good enough for letting Kimani be brain-damaged by meningitis.” In my anger, I have shown how ungrateful I am.

It is written in Genesis (a book I was made to reread this week for a class I am taking) that God said to Abraham, “Take your son, your only son Isaac, whom you love, and go to the land of Mori'ah, and offer him there as a burnt offering upon one of the mountains of which I shall tell you." Gen. 22:2. For those of you who aren’t up on Genesis, Abraham went but God spared Isaac at the last minute. In modern times who would obey that call from God to accept that their own child is the sacrifice? Not me.

Except for one little problem. It is already done, and my refusal of this as part of God’s plans for me has ruined our relationship. I can no longer participate in the Eucharist, the “Thanksgiving”, the communion with God. I am not able to “give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” as instructed in 1Th 5:18.

I ask myself, “Is she no longer a reason to bow down in thankful praise?” That is the message I got from Ann... that the way back begins with “Thank you.”

So today I begin my journey back, “Thank you God for her beautiful blue eyes.”

Through the Window

As I stand at my dresser rummaging through the top drawer for a pair of socks, I see you walking up our long driveway, unaware of me. You have on jeans, a black tee-shirt, and a cap facing backward. Well beyond a 5 o’clock shadow is creeping toward your goatee, and your long hair is tied back in a waving ponytail.

In this moment I see you the way some stranger, some other woman might see you... strong and sexy, competent and wild. The fifty yards and window panes that separate us have the power to suspend fifteen years of my life, and I begin to ache for you... a you I barely remember.

Without thinking, I put my hand up flat against the window as if it were possible to reach through it and touch the past. I am surprised at how cool the glass feels against my palm, cold like my heart.

If I left you now, I do believe I would spend the rest of my life searching for that man in the driveway.

You Might Be a Redneck

As Jeff Foxworthy likes to say, “You might be a redneck if... you eat naked ‘cept for yer undies and you rest yer feet up on the table.”



Or, you might be a redneck if you eat naked ‘cept for yer undies, rest yer feet up on the table, and scoop mouthfuls of spaghetti off yer belly.”



You can bet my pretty little redneck got a nice bubble bath after dinner tonight.

Advocacy Hurts

I have begun making an effort again to speak up when I read things about Down syndrome that are untrue... stereotypical cliches that get passed around to fill article space. But after just a few days back at it, I remember that it really hurts to engage with strangers who think the people I love are worthless.



For the longest time I had to stop reading the articles and posts that appeared in my “Down syndrome” Google alert. Eventually I just stopped the feed because reading what others nonchalantly write about people with Down syndrome is just so painful.



To believe them would be to believe that my children won’t grow up to be adults. They don’t have potential. They may end up in group homes, in which case it would have been more humane to abort them before they were born. My children are suffering, and they are burdens on me and my husband, my other children, my extended family, my community, and my country.



When I read things like that scattered here, there, and everywhere, I can’t help but want to say, “No, no that isn’t right. It isn’t that way. You’re being unfair and creating negative perceptions that have effects on people.”



But if I open my mouth, I am told to STFU. If I don’t shut the F up, I am mocked and put in my place, and invariably someone will point out that,

“not everyone with Downs grows to be an adult and is successful, it can be very dibilitating.”

(Yeah, because some people with “Downs” grow up to be, I don’t know, aliens maybe?)



And you can’t argue with that. I know you can’t because I have a child with Down syndrome who might not ever hold a job, fall in love, or leave home (until I die and she has to be put in a group home). I could say that it isn’t the Ds that makes her this way, but you could say she would not have contracted meningitis if not for having a heart defect related to her Ds that kept her in the NICU and started the downward spiral.



But I love her.

Did you catch that? She may be low-functioning, and difficult at times, but I love her. She may never learn to read and write. She may never stop throwing things. She may never grow up to be like anybody else, but I love her.

“It might be alright for you, but not everybody feels that way. Not everybody was cut out for that life.”

Really? I cannot imagine the woman who could have birthed her and raised her thus far who would not love her. It is for everybody, love that is.

Random Kyiv

I fall in love with places so easily, and Kyiv Ukraine was no exception. Lately I have been hearing it calling to me, “Come back to me, come back...” It actually hurts to think rationally that I will never spend weeks straight there again.











For Dee...








And I miss the shoes...

This Is About Execution, Baby

New business ventures succeed only if they have a strong business plan. You must find or create a need for your product. And then you must latch on to that need and promulgate it over and over until it becomes a necessity... stitch it into the fabric of your culture... make it the gold standard.

And that is exactly what the companies Sequenom and Verinata are doing with their prenatal blood tests that can indicate whether or not a fetus has Down syndrome. They are capitalizing on old fears, outdated ideas and stereotypes, and the need for a perfect child to the tune of an estimated 2 billion dollars a year.

Today www.xconomy.com published an article, written by Luke Timmerman, touting Verinata’s release of their version of the MaterniT21 blood test developed by Sequenom,

"The promise of this eventual capability has been in play for more than 20 years. Now when it’s finally here, there’s a wonder and awe in the community,” says Caren Mason, Verinata’s CEO.

Awe and wonder... I don’t think that is what I feel. Pissed off is what I feel. If you have time, go read the article. It provides the most straight-forward admission of what this push for prenatal testing is about, money. I am not against prenatal testing but I am against pressure to get prenatal testing and/or to terminate based on the results of testing.

The company has hired genetic counselors to help doctors with communicating results to patients, and has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason says.

Ms. Mason, it strikes me that there is a strong conflict of interest in your statements. The only way you convince insurance companies that covering the cost of your test is economically sound is to ensure them that the results of such testing will lead to the terminations of “medically expensive” children. So, to make your test worth it’s cost, your genetic counselors need to help doctors communicate to pregnant women that they should abort their babies with Ds.

It is beyond unethical for these companies to hire people to “help” doctors communicate with their patients. That kind of manipulation for financial gain should be illegal. I am pro-choice but to me that means a completely informed choice not a “choice” pressured by a doctor pressured by a genetic counselor hired by a company making billions off the whole scheme.

Don’t go running to invest your money quite yet as Timmerman goes on to write,

There are a million things that could sink the endeavor, whether it’s competition, litigation, insurance resistance, or physician skepticism. There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus.

While it might be ethical to use information about your fetus to decide if you want to continue the pregnancy, it is not ethical to insinuate that people with Down syndrome are too expensive to allow them their lives.

What else is not ethical? The constant articles dredging up (in a positive way, you know, with the intent of putting them to rest) old statistics, stereotypes, labels, and fears that serve to reiterate a negativity around Down syndrome.

And what I view as most unethical is a doctor or diagnostics professional not sharing the readily available information that gives a woman the freedom to research and educate herself about the baby she is carrying and what its life might be like.

Sadly, Mason does not seem to let ethics get in the way of money making,

She sounds deeply determined to get this one right. “This is about execution, execution, execution,” she says.

Yeah, Mason you got that right.

So here is my question readers, should companies like Verinata and Sequenom be required to share the results of their "economic impact" studies and the genetic counselors' coaching plans that will be used to "help doctors communicate with patients" with the general public?

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In case you don't have time to read the article, here is my "favorite" comment on it so far. I wonder exactly what "it" is that he wants people to think about.

I reckon the biotech segment is pretty hot right now. Why is this guy not writing the article about Sequenom? Really…..Think about it………….$$$$$