Oh Baby!

You won’t catch me blatantly bragging about my sons though there is plenty to tell. I just don’t do that in public.

But today I want to share with you a little bit about Kimani and how she is doing. Just a few of the highlights...

She is now almost 14 months old and weighs just about 20 lbs. Though she looks like a chunky monkey, she is actually in the 3rd percentile for weight on the typical chart and about the 60th percentile on the Down syndrome chart.



She says Dada, Gecko (well not really gecko... she says the real name for my oldest son), all done, and I go (which she uses to say she has done anything from a big poop to jumping in her jumperoo). She signs Mama, food/eat, all done, up, and more.

She eats table food and drinks from a NUK straw cup... uh, this is a minor miracle considering we just broke the 6 year old of his sippy cup and the almost 3 year old of the bottle.



She plays peek-a-boo, claps her hands to play pattycake, can blow a kiss, and squeals with delight when her stuffed Panda tells her he is going to kiss her.

She love love loves water... the bath, a pool... she splashes like crazy and isn’t the least bit phased by water in her face.



She rolls over and over and over, can sit unassisted, tries to push up into a sit, and is starting to pull forward. She has figured out how to work all of her favorite toys and is a grand master of the slinky.







This time last year she was lying in a PICU bed fighting for her life. Now she is growing and becoming quite the little girl. And I love her so.

On Suffering

I don’t think of suffering when I look at my pretty girl. But you do.

Don’t feel bad. It isn’t your fault. The dictionary tells you that to suffer is... “to endure pain, disability, death, etc., patiently or willingly.” dictionary.com

Down syndrome is a disability, isn’t it? And Kimani seems to be willingly enduring it.

I took my child to her pediatrician and while there had the doctor complete some paperwork that included my daughter’s diagnosis. The doctor wrote, “Down Syndrome” on the line and then in the part for a description of the symptoms, she wrote, “developmental delay.”

Huh, that’s it. My girl is slow to learn things. This is considered suffering in our society.. a culture that values the intellectually and physically fittest above all. And here I thought we were simply a beauty obsessed culture.



Too bad we’re not because she surely is gorgeous. A face made of all the pretty things we prize the most, particularly facial symmetry. With sparkling blue eyes and a dainty nose and rosebud lips she is perfection.. oh no wait.. those eyes, if you look close, if you stare at them long enough you can see it. The slight tilt gives it away... her suffering.

When she was newly minted, a mere two weeks old, I wrote in my journal “And yet she does not seem to be suffering. It is me who is hurting and scared.” And so it remains today.

The suffering is mine and yours.



Note: I could have linked the "you do" to numerous places but I chose this one because it makes me even sadder to know that fellow Christians think this way about my child.

Crossing the Chasm

For some reason when I look at this picture, I am transported in reverse across the chasm in time to the days when he was still all a mystery to me. A time when staring into those eyes could make my skin tingle and my heart race. Back then, I swear, my jaw would tighten and my incisors would stretch at the thought of sinking a bite into that neck.

Twelve years time has relegated those transcendent intimacies to mere memories triggered by the two dimensional, split-second capture of the abstract, yet sublime, husband.

Next week, in celebration of our tenth anniversary, we go away alone to a very romantic place. Yeah baby, 3D here we come!

Warriors

We were drafted. My only way out would have been to take her as the first casualty. Before I played this game of Risk, I knew I wouldn’t deploy that sniper. So now, here I am, far from the battlefield still dreaming of little shattered bodies.

This time last year I was living in a NICU chair, angry and sad, but still unaware of the real battles that lay ahead. I didn’t know yet that my baby and I had entered a war. I didn’t know that her aorta was too narrow and wreaking havoc on her heart and lungs. I didn’t know that a teensy bacteria could find its way into her brain and eat away at it. I didn’t yet understand that death really does come for babies.

Sarah, Rita, Jasanna, Miracle, Jayshawn, Bella, Savanna, Ryan, Kimani, Ashlyn... our battalion... some died, some made it out, some are forever wounded, some are still enlisted. I wonder if their moms feel like I do. I wonder if their dads play Guild Wars and kill fantasy creatures in dark livingrooms.



I wonder if I can ever get the shrapnel out from under my skin.

(Thanks go to my dear husband for providing the screen shot of his Guild Wars character (named after me, awww) standing over her latest trophy.)

Fell Down Today

A little something for Poetry Friday



Fell Down Today
I cannot cry, for if I do
Some one will say
Have you ever seen a child
with or without a this or a that
to make him whole?
Back to the truth
I cannot go, for if I do
My mind will say
Have you ever noticed that
a whole with no W
is just empty space
deep in my heart?
Fell down today, so down today.


Thanks Raffi for your endless inspiration.

I Don’t Need Your Ruby Slippers

It has been a rough couple of weeks thanks to the shooting death of Dr. George Tiller. By now you have probably heard of him... provider of the late term abortion. The blog-o-sphere has been burning with his name and the stories of his clients who traveled to Kansas to give what only he would take.

As many of you know, I am pro-choice. And, even if I did have a momentary lapse after looking at pictures of first trimester abortions, I have recovered. Because being pro-choice doesn’t mean that I have to think your choice (or mine) is good or even appropriate.

But if you are going to do it, be honest with yourself at least. Aborting a pregnancy, terminating a pregnancy, pregnancy interruption, losing a baby, letting it go, saving your baby from a “lifetime of suffering”... it all equals the same thing... choosing to end your baby’s life. That is a death sentence.

And I would do it.

You read that right. I know what it is like to be sitting in a doctor’s office with a belly full of broken baby. The difference was that, in my mind, my imperfect baby did not merit a place on Gordo’s broken baby list. He writes,

“If anything, late-term abortions should be less offensive, since they’re so often performed in order to save a woman from having to carry a fetus to term who has one of the following horrific conditions”

He put T21 on his “save me from this horror” list. He put my sweet baby on the hit list. When I let him know that Down syndrome is not a “horrific condition” and not worth a death sentence, he told me I must be lying about being pro-choice.

I am not lying. There are conditions on his list that I might not accept for my child. No, not the ones that are incompatible with life, like T18 or Potter’s syndrome... the other ones... the ones that are compatible... but are so very hard to live with. The truth is that I don’t know what I would do. And I will venture to suggest that you don’t either. Unless you are one of the few amazing parents out there who now know for sure, you just can’t sit back on your couch and speculate that you would choose life for any baby under any circumstance.

And why might I choose to terminate my baby? Because I am scared, selfish, ashamed, guilty, horrified... Because I have convinced myself that “letting it go” is “saving it from a life of suffering.” (Mainly my own suffering, but don’t tell me that.)

Or because I believe there are circumstances where people are better off dead.

Or because I read too much crap on the internet.

So let me say it again here on the internet, Down syndrome does not merit a death sentence. Doctors who deliver doom and gloom with a Trisomy 21 diagnosis do a terrible disservice to parents who are going through a very hard and very susceptible time.

Is my T21 girl a slow learner? Yes. At ten months old, it took her at least twenty readings of a certain book before she caught on to the game “How big is baby?” and she only throws one arm up into the air while squealing with laughter. I appreciate those who would take me to Kansas to spare me this horror, but thanks anyway, I can live with it.

We're Not In Kansas Anymore, Toto

I recently wrote a post, Not Like This where I explored my feelings about how hard it would be to have your baby die in a very busy, very public situation, like a NICU. What I didn’t tell you is that my husband and I had to go through the mental exercise of making decisions about a Do Not Resuscitate order and removing our child from life support. We had been counseled that it was better to know what you would want to do prior to a situation arising, than to be forced to make huge decisions in a highly-charged emotional state of mind (uh, yeah, like I wasn’t already in that state of mind...)

Take a minute to try to imagine your child being kept alive by a ventilator... his brain’s neurons no longer firing or his heart beyond repair.

It wasn’t hard for me to conjure up. Not even two weeks earlier the mother of a five month old baby girl who had aspirated on spit up during a nap, brought me in to “meet” her child... a baby who was alive now only because of a machine that pushed air in and out of her lungs. There was no need for the t-bone clip to keep the vent in place because this baby wouldn’t fight the tube... this baby would never fight anything again. She looked like she was sound asleep. If only.

Standing there, I remembered with guilty intimacy the guttural cries that had come from this young woman just days earlier when the neurologist broke the news to her that her baby was brain-dead. “No,” she had wailed, “noooo, noooo, noooo” Over and over and over again the protest rose from deep within her, and it had sunk and curdled inside of me. It happened on a Friday night around 9 p.m. My own sick baby was asleep in her PICU crib. I heard that sound, that mother’s anguish, and I had to leave. I went home. I could go home, but I could never abdicate my involuntary and unfortunate role of witness.

My husband and I pretended to make up our minds about various scenarios. I won’t drag you to tears with all the details. I’ll share just one. I would be the one to do it, to take the vent out. Because I couldn't live with the memory of someone else doing it.

So what’s the difference between Dr. Tiller, the respiratory therapist that extubated that five month old and ended her life, and me? If the situation is one where the baby will, without a doubt, not be viable after birth (off the mommy-vent), then is it so wrong for the parents to want a private death?