The Year-End Big Brag

It happens every December. The letters come, some on their own, some stuffed in Christmas cards, some on the back of holiday family picture cards. The yearly brags... gushing highlights from this or that family’s year in review. I enjoy reading them.

Each year I tell myself that I will write one... that I will update everyone on our family’s exciting progress toward perfection. I never do it. I can’t do it. Because my year-end big brag is filled with gaping holes.

But this year I finally forced myself to do it. Yes indeed, I wrote the year in review letter for an audience of one... one I do not have to (nor am able to) lie to. It starts off, Dear God...

I will share a few highlights of the highlights...

I apologized for the me that hasn’t died yet, the me that is still filled with rage and fire, the me that so poorly represents Him when I am telling off someone who has hurt me or mine.

I recapped my weaknesses that should be long gone by now but aren’t and then immaturely laid the blame at his feet. I reminded him that with all we have been through, that I should have more faith and loyalty to him, but then pleaded for no more trials by fire to improve in this area.

I thanked him for answering so many prayers including the ones that are selfish and silly, and probably not worth his time. I especially thanked him for sending Kimani’s bottom front teeth that a dentist told me did not exist.

I talked about my marriage, all my children, my goals, my spiritual state of being... the highs and lows, the proud moments and the shameful ones. And when I was done, I folded it up and tucked it away in a drawer.

And then I thought, ha ha ha, imagine if I took the salutation off and sent this letter out on crisp Christmas-wreath-bordered paper... Um, yeah, it wouldn’t be funny but it would sure be the real deal. I can picture the jaws dropping and the “oh, Lordies” flying. Gosh, don’t you just love year-end big brags?

Santa and the Hypocritical Blogger

We took the kids to see the Lights in the Park display... a dazzling spectacle of over 125 holiday scenes made up of Christmas lights. The kids loved it and I have to say it was positively impressive this year.

After the drive, we visited the craft show and had some treats. Can you guess who was there? Uh huh, Santa. Can you guess who let her kids sit on his lap? Yup, yours truly. I even let my husband snap pictures of my hypocrisy for your viewing pleasure.



Seriously though, I am fascinated by how they still want to check him out even though they know the real deal (in fact Gecko even announced it to Santa who promptly responded that he landed a spot on the naughty list for it.) Should I have denied their request to chat with him with a loud, “No way, he might be a pervert! It isn’t safe to take candy from strangers”? Perhaps, but instead I opted for the stranger-danger after talk.

Clearly the “in it/of it” thing is still a little blurry for me.

Somewhere in Kazakhstan...

There is a little girl named Jasmina who is waiting to be adopted. She is a beautiful child who has Down syndrome, and she is the only child with Ds available for adoption through Reece’s Rainbow in Kazakhstan. More than anything I would like to be able to give this child her forever family for Christmas. But I am not God (or Santa ;-) and I cannot grant her wish with just my will.

I can donate to her adoption grant and I can ask you to consider this gift as well. If you have anything left in your charity budget this year, please give to Reece’s Rainbow on behalf of Jasmina or any of the angels that are hoping to be saved from life in an institution.

Reece’s Rainbow accepts PayPal but prefers checks to save on processing fees. If you are going to send Jasmina a Christmas gift for her fund, please make the check out to Reece’s Rainbow and put Jasmina’s name in the memo. Mail the check to: Reece’s Rainbow, PO Box 4024, Gaithersburg, MD 20885. Thank you.

May you and yours be blessed during this wonderful Christmas season.

Holy Ho Ho Ho

Sorry to break the news to you but there is no Santa Claus, and no flying reindeer either. I’ll wait while you run for the tissue box. (And by the way, please don’t call the North Pole to tattle on me for this post... I don’t want coal in my stocking.)

My kids have been told from the beginning that there is no such thing as an all-knowing Santa Claus who sneaks into our house and leaves presents under our tree. They know that the guy in the mall is just that... a guy dressed up to represent another guy from long ago named Nicholas who gave away his wealth to those in need, particularly children. They know that Santa Claus is just a fun made up character who hands out candy canes from his throne in the mall. Before you lament my poor children for their scrooge of a mother, know this: it doesn’t matter that they know Santa isn’t real because apparently the Santa Claus myth is so deeply ingrained in our culture that my three year old does not even believe me when I remind him of the truth...

Jade and I were in the store a couple weeks ago playing with Thomas trains. He was having a wonderful time and got quite upset when I told him it was time to say goodbye to Thomas. He threw an all out, thrashing, screaming, waterworks fit right there in aisle 8 of A.C. Moore. I told him it was okay because he would be getting Thomas for Christmas in a few weeks, that “Momma Santa” would give it to him. “No he won’t,” he wailed, “He’s mean.” After a bit of back and forth about whether or not this particular train would be under the tree on Christmas morning I got terribly exasperated and shouted, “Jade, remember? I AM SANTA CLAUS! And I KNOW you are getting this for Christmas!” He looked at me through his tears and yelled back, “You are not Santa.” And so it went, with me tossing my dear child over my shoulder and heading for the door.

As you can see, we are not Santa sanitizers... I mean, his name does come up and we do tell the kids when they want something to put it in on their Christmas lists for Santa, wink wink. But we were very clear with them from the first time they saw the guy who he is and who he is not.



Christian parents get all weird on me when I say we don’t do the Santa hoax in our house... Really what harm is there in perpetuating the Santa Claus myth?

First of all it is a lie. A big lie. A big big big lie that gets bigger and more detailed as your kids grow in sophistication. And last I checked God still wasn’t into lying.

Second, it confers God’s characteristics... omniscience, the right to judge, supernatural abilities... onto a dead guy who through his unwavering generosity got sainted and made into a cultural icon. (And no, Santa is not an allegorical God and even if he were, the second commandment might be an issue ;-) It is also kind of hard to convince your children that the Jesus (they can’t see) part of Christmas is still true after they find out the Santa (they see everywhere) isn’t.

Next, it seriously detracts from the real meaning of Christmas. A visit from Santa becomes more important (and certainly more exciting) than the greatest birthday celebration of all.

And last... it goes against everything we teach our kids about strangers... Yes, Jade go hop on that strange guy’s lap and take candy from him... he’ll be sneaking into our house later this week...

So why do we do it and why do we get so upset when someone suggests that maybe we shouldn’t? That is not a rhetorical question... if you know the answer, tell me. Do you think Mary would have pulled the Santa lie on Jesus... “Guess what Jesus... you've been such a good boy that for your birthday this year, some made up magical guy in a red suit is going to fly in on a sleigh pulled by magical reindeer to drop off your birthday presents while you are sleeping... isn’t that nice?”


Get your own Jesus and Santa figurine.

For Those Who Pray

I have a blog friend who has walked in my shoes. Now she has been kidnapped and in her own words, "taken and stored in a terrible stinking rotten crate aboard a vessel I have not had the courage to name." Please take the time to visit her and pray for her daughter Willa, pictured above.

Our Fragile Emissary

A poem by Nancy Tupper Ling



With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

photo by Artist Anaa

No Cake for Her

TK turned 16. (Really? Really? Can she really be growing up so fast?) Of course she did not want some boring old cake. Nope. We made candy apples for all.






TK loves candy apples. Can you tell?



She was kind enough to share them with all of us. Even Kimani got a bite.




Here's one for you blog friend.

Pro-choice and A Christian?

I have said here publicly that I am pro-choice. I think it is also pretty obvious that I am a Christian. How is this possible?

I am pro-choice when it comes to sin. That is the simple explanation.

The more in-depth analysis of it is that abortion is complicated. I do not think any girl grows up dreaming about her chance to get a d&c. There may be some women who are more callous in their public expressions concerning abortion but for each woman who has walked that road, surely there is a personal story. Most likely a personal tragedy of sorts.

I know it is a baby. I know it should have rights. I am not one of those who beats around the bush using euphemisms such as “losing it” or “ending a pregnancy”. I get what is going on, and though it sometimes makes me sad, most often I feel it is not my business to attempt to regulate other people’s personal lives.

So in a nutshell, here is what I would dictate if I were The Dictator of the world. You can have an abortion up to 16 weeks. After that no deal unless there is proof that the mother risks death or a permanent disability by continuing the pregnancy. (Sorry, mental anguish doesn’t count.) An abortion could also be performed between 18 and 28 weeks if there is proof that the baby will not be viable after birth or will have such a low quality of life medically that it could be considered cruel to save the infant's life. (Sorry, T21 doesn’t count).

Why 16 weeks? At about 22 weeks modern medicine can keep a fetus alive in a NICU. Eventually they will be able to do it without the baby having any of the complications that are a concern today. A 16-week old fetus is entirely dependent on its host mother and cannot be transferred to any other environment and still live. 16 weeks is long enough to know your situation and make up your mind. In time, with medical advances, this dictator could be persuaded to change the number of weeks.

How can a Christian woman believe these things? We are all sinners, and thus all equally guilty according to James 2:10, “And the person who keeps all of the laws except one is as guilty as the person who has broken all of God's laws.”

Don’t argue with me about this. It is a view that has been about 25 years in the making. If you have an irresistible urge to exert some energy on this subject, first go adopt Dasha (who is just 3 months older than my sweet Kimani) and then come back to talk me out of my stance.

The Joy of Boys

It is barely 7 a.m. and I am still sleepy. Gecko is eating breakfast in the kitchen, getting ready for school. Little Jade is in the living-room running around still in the buff...

Gecko, yelling loudly: “Hey Jade, if you play tag with your penis, it always wins! Because it is attached to you!”

Jade, yelling back just as loud: “My penis isn’t attacking me!”

Boys are such funny creatures, aren’t they? Do you think Mary ever had to deal with this hilarity?

You’re So Predictable

(To my beloved regular readers... please turn back now. I am not talking to you in this post.)

I am talking to you, stranger... multiple you, those of you who expound on the reasons why babies with Down syndrome should be throw-aways. You are always lurking out there ready to jump into any Ds-related comment thread on any high-profile blog. And you are so predictable that you fit into one (or more) of the six categories below.

I’ve got a little something to say to you, so here we go (better put your seatbelt on).

Hello pro-choice zealots... I’m starting with you. There is no need to turn every discussion about having a baby with Ds into an abortion battle. If the mother of a person with Ds says something positive about her child that doesn’t mean she is suggesting that we overturn Roe vs. Wade. Take your freaking-out self to a blog post that is arguing to restrict or end abortions, kay?

Hardcore pro-lifers... you’re next. Your obsessive attacks against anyone who even thinks about terminating any child are NOT helping to show the general public that people with Ds are more alike than different and worth keeping. All you are accomplishing is making people think we parents of children with Ds are flagellants. So please go follow the pro-choice zealots to wherever they are headed and continue your fighting over there.

Dear maltreated taxpayer... you ask who is going to get stuck paying for these “incapables” once their parents die? Probably the same people who pay for welfare kids, prisoners, EIC, mortgage bailouts, WIC, disaster assistance, Pell grants, Head Start, HUD, wars in the Middle East, etc. Yup, that’s you, and me, and my husband, and my parents, in-laws, aunts, uncles, cousins, children, siblings, nieces, nephews... you get the idea, right? But more than likely there will be parent resources that have moved into a special needs trust... after all, did you know that when you die your money doesn’t go with you to Heaven?

Concerned pseudo-doctor... oh the pain and suffering we have inflicted on these poor individuals with Ds by letting them live. Not for nothing, but Ds is not CP, autism, cancer, SMA2, spina-bifida, etc. Stop comparing Down syndrome to things is it not. (Note: to the parents of children with those medical issues I named, I mean you no harm. I am simply saying that our paths are not interchangeable.) Wanna-be doctor, doctor, are you listening? Hear this... Down syndrome does not cause pain and suffering (though you often do).

Distant relative, next-door neighbor, friend of someone’s someone... you claim to have witnessed from afar a sad situation concerning a person with Ds who became a horrendous burden on everyone around him, causing his siblings to be neglected and eventually driving the mother to suicide. Um, yeah, how come its you out here complaining and not one of those siblings? I’m not saying your exaggerated story isn’t the god’s honest truth... but let’s acknowledge that this sort of rotten apple situation occurs across the entire population and is actually more common amongst typical folks than those with Ds (alcoholics, drug addicts, child abusers, dead-beat dads, porno dolls, and Bernie Madoff, please stand up and take a bow).

And my personal favorite, the incredulous ignoramus who thinks parents who love and appreciate their children with Down syndrome must be lying or delusional... Oh I have so much to say to you but none of it is appropriate for my rated pg-13 blog, so let’s just leave it at, “WTF?”

What’s that you say? You don’t fit into any of the categories above? You have something fresh and intelligent to add to the discourse? Tell me where to meet you. I’ll put on my boxing gloves and be right there.

Get in Line

I love France and all things French. Well, almost all things... French people have no sense of a queue. There I was patiently waiting in line at the post office when a woman in a skinny black skirt and clicking heels stepped right in front of me as I headed up to the window. Surely the clerk would tell her that I was next and ask her to get in line... but no, this is France... and line butting is an art over here.

Rude, aren’t they? I mean really... what kind of people butt in line?

I’ll tell ya what kind. You do. Picture this... you’re driving down the interstate (or any two, three etc. lane road) and you see a huge construction sign on the shoulder. Blink, blink... right lane ends 1 mile. Cars have already slowed, a line has already formed in the left lane. The guy in front of you is still moving along at a good clip so you follow him and contemplate your move into the left lane.

Do you cut in now, as soon as you realized what is going on? Well did you? (Yes? well ok, then this post is not about you, dear considerate person, and I apologize right now for having pointed the finger at you in the last paragraph.)

Maybe you floated along another 1/4 mile and edged in front of a tractor-trailer...

Or not. Now the cars haven’t just slowed on your left, they are crawling... a bumper to bumper metal snake. The guy in front of you finally cuts in with a friendly wave to the driver that held a place for him.

You look left and see the driver in the car next to you is actively ignoring you. Do you put your blinker on and hope the next guy lets you in?

(Not if you’re my husband. You boldly continue on while your wife begins to fret in her seat.)

By now you’ve passed three more signs, the last one indicating that the right lane ends 500 feet ahead. Do you start scanning the drivers to see which one will let you in? Or do you go the distance and then force your way in (after trying to smile and wave your way in.)

It is me you’re cutting in front of and I am going somewhere important too. And while I am wondering who the heck you think you are to fly past the twenty minute wait and push your way to the front of the line, I am also wondering what kind of petty person I am if I don’t let you.

Ok, so most likely I restrained myself and didn’t bang into your car as you angled in front of me, but if you heard me yelling “Canard!” out the window, know that I was insulting you in French.

A Lullaby for Kimani

On July 26, 2008 I stumbled upon these verses. Kimani was battling meningitis and no one was sure yet who would win. Next to the verses I had written the date and the words, "A little lullaby for Kimani".

A song of ascents.
I lift up my eyes to the hills—
where does my help come from?

My help comes from the Lord,
the Maker of heaven and earth.

He will not let your foot slip—
he who watches over you will not slumber;

indeed, he who watches over Israel
will neither slumber nor sleep.

The Lord watches over you—
the Lord is your shade at your right hand;

the sun will not harm you by day,
nor the moon by night.

The Lord will keep you from all harm—
he will watch over your life;

the Lord will watch over your coming and going
both now and forevermore.

Psalms 121: 1-8

Wednesday Is Spaghetti Day

Pizza Hut Post Notes

I made this up of course.

About a year or so before I had my first child, I saw a little girl with Down syndrome in Pizza Hut when I went to pick up a pizza. She was beautiful. She had piles of curly brown hair and huge sparkling blue eyes. Her dad was holding her, waiting in line for a table, so she was actually “taller” than I am. She stared right at me, right inside of me. I felt like we knew each other. She waved and so did I. It was surreal and obviously I never forgot it.

Last week, or so, I came across a post on a board where a woman was trying to decide if she should keep her fetus with Ds or “try again”. That evening I got to thinking about how a person would explain to a real human with Ds why they were not wanted. I thought that having that conversation might help a woman to figure out her feelings.

These two events collided and became the post, Lunch at Pizza Hut.

So while I like when you tell me I am brave to be so honest, the truth is I never even considered an abortion. I skipped all the prenatal tests because I did not want to be put in a position to even think about it. By the time they found the baby’s heart defect on ultrasound I was 28 weeks pregnant and there was no way I was turning back. It wasn't even on our radar.

Would I have chosen to abort her if I was in a different life, or at a different point in this life? I would hope that I would have still chosen to go forward, but I am me now, not some other me, so I can’t answer for her.

I can only say that I am glad I am me now and that Kimani is mine. And if you're going to be reading this blog, you’ll need to get used to the occasional bit of creative fiction.

Making Me Proud

I can only hope my sons will grow up to be like this kid. If you care at all about me or my daughter Kimani, please take ten minutes out of your day to watch this video.

Lunch at Pizza Hut

In my dream I am sitting in Pizza Hut because that is where I first saw her. She wanders over to my table with her big blue eyes locked on mine. She has curly brown hair... curls... rare for a child with Down syndrome. She holds her baby doll up and asks if they can sit with me.

“I don’t want to be your mother.” I blurt out.

She slides into the seat and looks at me with surprise.

“Why not?” she asks.

I suddenly feel guilty and defensive. “92 percent of mothers just like me don’t want to be your mother.” I answer foolishly.

“Why not?” She repeats her question.

“Well, because you are not as smart as other kids.” I begin.

She cuts me off with a song, “a, b, c, d, e, f, g...” After it is over she continues, “Your shirt is blue. I know that and so I am too smart.”

I thought she was four or five years old but now I see she has a gap where a bottom tooth has gone missing. This must make her more like six.

“I think you will cost more.” I tell her.

As if she is reading my mind she says, “I don't wear diapers anymore. Those are for babies.” To prove this fact, she lifts up her baby doll and shows me its diapered bottom.

“You might get sick.”

“I already was sick.” She answers. “See?” She says as she pulls her tee-shirt up over her face to reveal a faint scar running vertically down her whitish-pink chest.

“Did that hurt?” I wonder aloud.

“I don’t remember. My dad says it hurt him real bad.” She answers, her small voice muffled by the cotton shirt.

“Put your shirt down.” I say and she does.

“You might grow up to be ugly.” I know this might hurt her feelings but I have to say it.

“All grown ups are pretty.” She laughs, “Except for the boy ones. Some of them are stinky.”

“I mean, you might drool or your tongue might protrude,“ I clarify.

She sticks her tongue out at me. “My tongue is pretty,” she says, “and I only stick it out when I am tired.”

“You might die.” I feel bad saying this but she needs to know the truth.

Her answer is soft, “If you won’t be my mommy, I am already dead.”

We eat in silence for a while. When my slice is finished, I tell her that I must be going now.

“Will I see you again?” She asks.

She has worn me down. “Yes,” I tell her, “I think so.”

I’m Not Special

It wasn’t a religious thing, nor was it a moral thing. And, I am not special.

I didn’t want a baby with Down syndrome. Really, I didn’t. But more than that, I didn’t want to face an abortion.

She was a wanted baby. We made her on purpose. We were thrilled and excited to be pregnant again. It is not like this was some college accident.

I am lucky... I can get pregnant at the drop of a... well, you know how it works. We could have very easily done a do-over. Two, three months later I would have been pregnant again. Most likely it would have been a perfectly typical baby.

But to get there, I would have had to choose death for the zygote, fetus, baby that was already on the way. I, me personally, would have had to say definitively that this person should not live. Then I would have had to get up on the table to prove it.

I just couldn’t do it to her.

And everyday, as I bask in the light that shines mysteriously around her, I am so thankful that her story didn’t end that way.

Photo credit: Artist Anaa

If Jesus Were My Son

Or rather what if Mary had a baby with Down syndrome... would she have asked her son Jesus to take away it away?

I’ve already said what I would do if given the choice but I wonder what would Mary do? She didn’t mind asking him for a little wine to get him started on his long train of miracles... And what’s a bit of wine compared to an extra chromosome?

Jesus cured a lot of things. Some of them were probably congenital defects. Nobody brought a person with Down syndrome to Jesus for healing. Were there no children with Down syndrome around? Was in not considered something that needed fixing?

In Mark chapter 8, a few verses after Jesus heals a blind man, he has this to say, “For what shall it profit a man, if he shall gain the whole world, and lose his own soul? Or what shall a man give in exchange for his soul?” What would I gain if Kimani’s Ds was gone? What would she gain? What might she lose?

I am thinking that Mary would not have asked Jesus for this “miracle” because... well... wine isn’t very life-changing. I am sure that throughout her time with Jesus there were probably many, say more meaningful, things she could have asked him for. Surely she knew people who were dealing with sickness, or infertility, or some other life-altering sorrow but when it came down to it, she asked for wine at a wedding.

Wine? Really? Come on... this was his MOM, she had an IN...

But maybe she already knew that her son’s miracles were more about lessons to be learned and majesty to be shown than “normalcy” to be gained.

Maybe I am wrong about Mary. Maybe I don’t really have a clue what she would do. Maybe I should head over to Seedlings In Stone and leave a comment so I can win the book she’s giving away this week, The Real Mary by Scot McKnight.

10 Years Ago Today

Dreaming

Can you guess what he's dreaming about?

The Blessing of Tragedy

I have a confession to make.

There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.

Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.

Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?

I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.

Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.

And then the Lord God reached down and slapped me so hard my head spun.

Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.

I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.

She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.

Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?

I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.

As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.

As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!

And that is the greatest blessing of all.

Umm, Yum Yum Yum

I like to watch my children eat. Not candy or cake, no not sticky or dried-up things.

I like to watch them eat strawberries, watermelon, and icy popsicles. Their little bodies maneuvering however necessary to get a tasty chunk captured and stuffed into place. The juice dripping over lips and down chins. Their eyes lighting up, perhaps fueled with the frenetic energy generated by their taste buds.



I feel great pleasure as I watch.

Sometimes it is a guilty pleasure as I can’t help but think how many children in the world have hardly even a bowl of rice to eat each day while my children eat fresh fruits, vegetables, and treats.



Sometimes it is a confused pleasure as I wonder why I am obsessed with watching them as they devour morsels of egg salad sandwiches and spoonfuls of peanut butter. There is always a bit of the food that gets waylaid and ends up decorating their faces like some artist’s masterpiece. I don’t remind them to wipe it off.

Sometimes it is a horrified pleasure as I watch them use two hands to speed up the process, and elbows to protect their treasure from one another, like junkies.



When my oldest son was just three he used words like delicious, scrumptious, delectable, succulent, tasty, and luscious, and of course, yummy. It became a bit of a game coming up with a string of adjectives whenever he ate something enjoyable.



I think the draw for me might be because my children like to eat. They don’t worry about getting food on their fingers or chins. They aren’t distracted by making meal time conversation. They don’t feel compelled to avoid choosing the biggest berry out of politeness. They aren’t trained yet to eat the things they like the least first.



I realize I am making them sound a bit like wild dogs pouncing greedily on their prey but... Well, maybe so. Maybe it is the naturalness of it that I am so enthralled by.


Picture credit... I don't know who the artist is but my friend Dan bought this painting. I'll bet his wife is thrilled.

Now That's Talent

My what prehensile feet you have... The better to grab your smile with, she said.

Snapshot

Over the phone, a long distance connection, I told my father that the baby I was carrying, my third and last, most probably had Down syndrome.

His response was simple and heavy. “That stinks,” he said. I felt his words, the weight of his disappointment with a hint of frustration, the kind a parent suffers when they can’t fix your boo boo for you. So much wrapped up tightly in those two words. I cried and cried. Not because he said it, but because I felt it so strongly. It did stink. In fact, it sucked.

When my baby’s body came bursting out of mine and popped to the surface of the water into my waiting arms, I saw it. There was a chunky roll on the back of the neck. “Down syndrome,” it whispered to me. Two words. I did not cry when I heard them.

I refused to cry in front of the strangers who put ointment in her eyes and vacuumed out her nose. Strangers who pretended not to see what could not be missed.

My husband was snapping pictures. Over and over I heard the clicking. It was his job and he did it well. There were so many pictures... but they all said the same thing... Down syndrome. I grew tired and sad looking at them.

More and more pictures were taken but that tiny voice would not be silenced. I could not email these pictures to friends and family. They all knew of course but they had not seen. There is a difference.

Eventually I got a couple of shots that were hushed. By then I was distracted by other worries. Would she find the strength to eat and come home? Days rolled together into weeks and her body weakened. The neonatologist put her on a fluid restricted diet and started pumping lasix, a diuretic, into her. She did not gain weight.

What do you say when you first see someone’s new baby who has Down syndrome? Aside from the standard platitudes there was the surprising, “She doesn’t look like it.” I didn’t know how to take that. I didn’t want her to look like it I suppose... after all, isn’t that why I took one hundred pictures to get one that I could send around? But hearing that upset me.

Over the weeks I realized why. The less she looked like it, the closer she came to dying. She was in an induced failure to thrive, fighting blood sepsis and meningitis, and chugging along on a broken heart and a constricted aorta. The space where the long gone fat roll had occupied now whispered, “I'm dying.”

I could have let her die. In my heart and mind, I could have let her go. But I did not. Day after day I watched over this tiny stranger who was my baby and prayed for her to live. I’ll take the fat roll and the different looking pictures. I’ll take the Down syndrome. I’ll take it all, just give me my baby alive.

She is who she is. Now I see that. Now I accept that. And guess what? It doesn’t stink. Nope, it doesn’t stink at all.

Who Is Normal?

Normal, I suppose, means to conform to preset cultural expectations. But who is capable of this in all areas of their existence and if you strike out in any area do you become abnormal? Does it take a certain amount of misses to get that label?

Here is an interesting view of our society... a few facts about we, the people, who find ourselves creating the ideology of a normal life...

One in every 31 American adults, or 7.3 million Americans, are in prison, on parole or probation.

52 people in the US will die today, and everyday, from drug induced causes.

Nine of every 100 high school students has tried to commit suicide.

Somewhere between 1/4 and 1/2 of married men have cheated on their wives. About a 1/3 of wives return the favor.

735 children in the US will be physically or sexually abused today, and tomorrow, and the next day, and every following day.

One in 20 Americans have depression.

I could go on and on with this list but you get the idea. Our prescribed expectations of normal are just fantasies and culturally agreed upon standards. Because really, normal is about quantity not absolutes. The more things are a certain way, the more normalized the thing becomes. The net of normal widens with every incidence of something.

Normal people experience both joys and sorrows. Normal people make mistakes. Normal people get cancer, diabetes, and heart disease. Normal people have low, average, and high IQs. Normal people are ugly and beautiful. Some normal people are homosexual. Some normal people have red hair. Some normal people have autism. Some normal people are gifted. Some normal people have Down syndrome. Normal people are all different.

One in about 800 babies who are allowed to live have an extra 21st chromosome. For every one that lives, approximately nine are killed in the womb (though these statistics are beginning to shift in a good way). This means that the creation rate of babies with Down syndrome is really about 10 in 800, or 1 in 80 people. More common than redheads and Ferrari drivers, people with Down syndrome are actually quite normal after all.

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?

Inside this Body

Can you guess why my beautiful girl is singing? Because she knows that she holds the key to curing cancer.

If we as a culture had successfully killed off all fetuses with Down syndrome, the cure you may someday desperately need would be that much further out of reach.

While she has meant the world to me since her arrival in it, I am so pleased to think that her existence, and that of those like her, may bring about the greatest and most elusive cure in modern medicine. Let’s hear it for that extra 21st chromosome!

Prayer #2847

Through the years I have often wondered about prayer... what to pray for, and if it really matters. My prayers started off fairly simple in the early days, "Lord, if you take away this hangover, I promise to never drink Mai Tai cocktails again." Eventually I stopped being so self-centered, "Lord, please keep Cute Boyfriend safe on his motorcycle."

Time wore on and I began to pray more consistently for things I deemed important... someone’s health, marriage, salvation, or the outcome of a court battle. I wondered if those prayers made any difference. It was hard for me to have faith when the conversations seemed so one-sided. Even when things turned out the way I wanted, I still wondered, "Was it always meant to be this way or did my prayers influence the outcome?"

When I found out that the baby I was carrying had a massive heart defect, and that it might be an indication of Down syndrome, I wanted to pray the right prayers but had no clue what they were. Should I pray for a miracle... that the baby’s heart would be fixed in utero and that there would only be 46 chromosomes? Why not.

He answered "No" on both counts.

I prayed that she would eat, that she would heal, that she could go home... "No, no, no," He said. Everyone else prayed too; family, friends, church acquaintances, strangers... hundreds of people, all praying a prayer that, summed up, sounded like, "Let her live."

But after weeks and weeks, it was looking like we were going to get the ultimate "No". And this got me to wondering about my relationship with God. Isn’t He my best friend? Doesn’t He love me? Doesn’t He want only good for me? Let me tell you, if I had any other friend who had the power to save my daughter’s life with one breath of their attention, and they chose not to, well we wouldn’t be best friends anymore.

Did those prayers matter at all? Was she destined to die on some predetermined schedule?



When king Hezekiah was deathly ill, Isaiah told him that the Lord said he would not get better, that he would die. When Hezekiah heard this, he turned his face to the wall and prayed to the Lord, "Remember, O Lord, how I have always tried to be faithful to you and do what is pleasing in your sight." Then he broke down and wept bitterly. God tells Isaiah to go back to Hezekiah and say to him, "I have heard your prayer and seen your tears. I will heal you... I will add fifteen years to your life..." 2KI 20:2-6

Well, Hezekiah’s prayer made a heck of a huge difference, now didn’t it. Hence, I kept on praying for her life. Somewhere around prayer #2847 on her behalf, I realized that I was missing something. You see, I was still mad at God for not performing the miracles He could have. And all those "nos" were starting to make me question my faith altogether. What would it mean for me and God if He let her die? Could I still trust Him, love Him, believe in Him?

Thus, prayer #2847, "God help me to accept your decision concerning my baby. Help me to forgive you if you take my daughter back. Help me to not let my broken heart stand in the way of our relationship. Help me to let go and let you, even though I can’t understand why."

"Yes," He said, "I’ll give you that." And, finally, I felt peace inside.

Got A Lot?

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Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.



The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.

Triple Play Date

Our playgroup, Triple Play, got together for lunch last week. Getting five little ones to all look the same way and smile while five mommies are trying for that perfect shot is a tough. (Where is Artist Anaa when you need her?)

We took the kids to the store today and I realized that I am still watching people watch her. I wonder what they see. I am so crazy about her and I see so many children with Down syndrome all the time now that I no longer see it. I only see them.

Then I take her out. You would think babies have magnets instead of poop in their diapers or something. People just gravitate to her carseat and stare. Surely it is because she is so darn cute.

So let's just suppose Mary had a baby with ds. She, Jesus, and the rest of the gang are wheeling the baby around the market square and over come the "lookers". Does a popular tune run through Mary's mind, "Don't you wish your baby was cute like mine?" Does she ignore them? Does she speak up, "What the Sheol are you staring at?" What would Mary do?

Exactly What They Were Staring At:

Stinky-Winky

Every weekday morning I rise early (6:15... that’s early to me) to get my five year old off to Kindergarten. I am usually so exhausted that I grab the nearest pair of sweats and a tee-shirt to put on until he is safely aboard the bus and I can go about getting ready for the rest of my day. This morning the tee-shirt I happened upon was one of my husband’s and already worn.

Back in the dating days this would have been a real find. I would have reveled in a pheromone-induced stupor, fantasizing about the manliness that produced such a heady aroma. With each sniff, visions of his killer baby blue eyes and naturally muscled body would dance in my mind.

But not this morning. Today I got a whiff of myself while preparing a peanut butter and jelly sandwich for Gecko’s lunch and thought, to borrow a phrase of his, “Whew, stinky-winky.” My next thought was to put “do some laundry” on my to-do list for the day.

Hmm, sometime in the last twelve years I stopped finding my husband’s dirty tee-shirts enticing. How could this happen? What does it mean? A mini panic attack set in. I tried some concentrated sniffing, far from the adulterating scent of peanuts, eyes closed... Nothing. Well, nothing positive anyway.

I walked my little guy down to the bus-stop and then headed back up to the house. The tee-shirt went directly into the washing machine. While pouring a quarter capful of Tide into the machine, I contemplated love. Ok, so maybe sweaty shirts don’t smell so good to me anymore but here I was at 7 a.m. washing my husband’s clothes... that’s love isn’t it?

In my mind, I called him up at work, “Hey baby, I wore your tee-shirt down to the bus this morning and realized how much I love you.” In reality I tucked his nice fresh clothes into his drawers and thought about what yummy dish I might prepare for his dinner. Sometimes that’s just the way love goes in our house.

Anyday

Wash some dirty dishes
Gather up rumpled clothes
Diaper a soft pink bottom
Change the sheets
Pluck a few stray eyebrows
Wonder why
Feed hungry mouths
Drink some black tea
Pick crumbs off the couch
Change the batteries
Read Moo Baa La La La again
Wander room to room
Barely balance an account
Shampoo little brown curls
Pass out vitamins
Write a couple lines of code
Kiss husband hello or goodbye
Scribble a grocery list
Wish vaguely
Sweep up dried playdough chunks
Empty the dishwasher
Fold warm scented laundry
Brush sixty-eight teeth
Type a blog post
Lay my head down
Whisper a prayer
Get one day closer

Liar

Liar

He came stealthily, consistently
whispering in her ear
You will love it, Liar said.
It being most anything to
cripple, consume, destroy her.
Maybe she tried not to hear
Maybe I tried not to see
and yet,
their pact grew stronger

He came disguised as mother
whispering in her ear
Take my hand, Liar said,
the abyss is not that far
and I am here to guide you
Maybe she tried not to follow
Maybe I tried not to look
nevertheless,
her hands grew colder

Liar came and away she went
whispering in his ear
At last my love, she said
we’ll do those things you promised
together, consumed, destroyed
Maybe she’s trying to forget
Maybe I cannot remember
either way,
my small heart is cracked