The Unknown Contributor

Drama 101

2012-01-24T11:05:00.005-05:00

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

2012-01-22T17:20:00.002-05:00

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?

2011-12-22T10:41:00.003-05:00

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

2011-12-20T07:00:00.001-05:00

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

2011-12-19T12:50:00.003-05:00

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?

2011-12-16T11:32:00.004-05:00

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

2011-12-14T10:42:00.001-05:00

Here is part one if you missed it.

We stood up together to make a run for it but the stranger caught me from behind. As he swung me around, he punched me in the face. His fist connected with my upper left cheek and for a few seconds everything went black with bright spots flashing. The hit should have sent me crashing to the ground but he still had a firm hold on me. Luckily, my friend was getting away because the other guy was not interested in attacking American women. He just watched.

She came back though. She rescued me. She whacked him in the face with her umbrella and got herself a massive kick to the stomach in return. It was enough to divert his attention and I scrambled backward out of his reach. Before he could decide which of us to come after, I screamed at her to run the other way and I ran out into the road.

I ran right into the path of an oncoming car, the only car on the road. It swerved, screeched to a stop, and two men got out. One of the men was the tram driver. I was hysterical. I told him over and over that a man had hurt me and I asked them “Where is my friend?” I don’t know how those men understood what I was saying in my broken, sob-filled French, but they did.

They wanted to take me to the hospital, the police station, or even home, but I kept asking them about my friend. So they drove up, down, and around the streets near the station until we found her. She (whose French was so much better than mine) explained to them what happened, and then she told them where we each lived.

You wouldn’t blame me if I packed up and flew home, especially if I told you I saw him again a couple days later on the tram, on my way to school, and he flicked his tongue at me like a snake. But as scared as I was to go out to class, I stuck it out. Eventually, I made friends and found out I was living in a French ghetto highly populated with Algerians. I learned that (back then anyway) the French and the French Algerians hated each other.

Oddly enough, it was a friendship I made with an Algerian shop keeper that kept me in France. His tiny grocery store was located on the roof plaza of the building just across from mine, accessible by a pedestrian bridge that was attached to our building a few floors below me. There was a butcher shop and a bakery over there as well, and that plaza was just about the only place I wasn’t afraid to go because I didn’t even have to go down out to the street.

The stranger who owned the grocery store was tall, well-built, with dark hair, dark eyes, and a beautiful smile. He made such an effort to befriend me, tolerating my immature French, asking me about myself in between explaining as best he could the difference between the zillion types of milk. He wanted to know if I was enjoying his country, and so I told him my tram station story.

It made him visibly angry. He brought his sister out from the back room to tell me in her broken English that he would take care of this problem for me and that I should not be afraid to go out. She said that her brother was my friend and that this meant that I would be safe anywhere in the neighborhood. She was right. I stayed in France until the following July and I never saw tram man again.

I’ve never stopped traveling, but tram man taught me quite a bit about how to do it. I’ve also never been able to kick the innate fear of strangers that most of us have but I do recognize it for what it is and find my way around it.

Is Kimani a Real Girl?

2011-12-12T15:40:00.006-05:00

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

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

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

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

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

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

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

The French Strangers - Part One

2011-12-11T09:06:00.000-05:00

Ever since I spent six weeks one summer partying in Montreal, I have felt that I should go everywhere I can, whenever I can, for as long as I can.

(Did I say partying? No Dad, I was learning French, studying every day, behaving myself, I pinkie swear it.)

On the 27th of September many years ago, I landed in Lyon, France with a bunch of college students from all over the US. We arrived by van in Grenoble after midnight and I was handed off to a tiny blond lady who had agreed to host me and another girl. As Madame explained the house rules to us, I realized that all those years of French class didn’t add up to much and my brain hurt terribly.

(Uh, guess I should have studied French during my immersion program in Montreal.)

On the night of October 3rd, not even a whole week into the great adventure, I was at the deserted end-of-the-line tram station, our stop, waiting for my housemate who was supposed to be on the last tram of the night. I was with another female student who lived near us and had agreed to show me how to get there and to keep me company.

On the far side of the station parking lot was a Superman kind of phone booth with a metal bench by it. I had a new fancy phone card, so I stepped inside to call my mom and wish her a happy birthday. We talked for a few minutes until the clicks cut in and a pretty French robot voice said something like “you are out of time”.

I hung up the phone and turned to exit the booth, and there he was... pinning the door shut. Medium height, slim, dark hair and eyes... the stranger I never saw approaching. His companion sat next to my friend on the bench. She looked frightened.

After a moment of grinning at me through the glass, he opened the doors, pulled me out of the booth and pushed me down on the bench. I could not understand much of what he was saying but he would not let go of my arm. His powerful grip transcended the language barrier.

My friend and I talked over them, trying to come up with a plan. There was no one else around. The last tram had come and gone, and my housemate had not been on it. The station lights had gone out and there were no cars left in the lot. The adjacent road was dark and quiet.

I remember being glad that I had just said “I love you” to my mother.

I Don’t Wanna Be an Independent

2011-12-07T14:00:00.002-05:00

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

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

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

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

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

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

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

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

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

Can Anybody Tell Me...

2011-10-20T19:48:00.002-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A GOP Nominee of Our Own

2011-10-09T00:10:00.003-04:00

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

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

Crushing on Nietzsche

2011-10-02T18:16:00.004-04:00

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

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

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

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

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

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

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

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

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

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

"Fuk Off & Pray"

2011-10-01T18:04:00.006-04:00

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

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

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

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

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

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

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

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

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

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

Before... and After

2011-09-11T12:27:00.002-04:00

Before the actions of hate struck fear and then sorrow into our hearts, only one of our combined eight children (who range in age from 24 years to 22 months old and have all been to NYC) ever saw the Twin Towers in real life.

When TK was in second grade, my husband took her into NYC for a day of fun and adventure. A few months later, she started third grade and life as we knew it changed forever.

She doesn’t remember the trip, nor does she remember how our day played out on 9/11. At that time my husband and I had not yet even begun the talks about creating her younger siblings and her older half siblings lived far away and only came to visit NYC after 9/11.

This morning I made our children who live at home watch some of the 9/11 anniversary specials on t.v. They fussed, bored and antsy to get back to their cartoons and computers. They could not feel my sickened stomach as my memories flooded back. They could not feel my sadness as the victims’ family members shared their stories. For them, 9/11 is a page of a history book, as Pearl Harbor once was in my mind.

For me 9/11 made all historical accounts of war and tragedy real, tangible, things I can now truly envision and feel when I read about them or visit sites like Babi Yar. But for my children, before and after 9/11 is all the same to them, and a part of me hopes nothing ever changes that.

Baby's Got Down Syndrome, 4: She's Got My Legs

2011-09-01T09:00:00.002-04:00

I watch her tromp across the kitchen floor after her pink ball. She has on navy blue shorty shorts and tiny boy-looking New Balance sneakers. I am captivated by the shape of her legs. Those sleek calves, rugged knees, and straight-lined thighs... How can it be that she has legs just like mine?

By the end of my pregnancy, I had so many fears about what a child with Down syndrome might be like. Surely this child would be chubby and have a flat face. Stubby limbs, a giant tongue, droopy everything... Isn’t that what the literature from the doctor’s office said?

And then I delivered a baby that looked like... a baby. She was fairy tale pretty. Three years later, that baby is gone, replaced by a little girl with my legs. But something still isn’t right. Meningitis turned her mind into a labyrinth. Words cannot escape, images are lost, neurons get rerouted. This is not the typical development of a child with Ds, is it? Specialists brushed off my concerns contributing every difference in her physiology to the extra 21st chromosome.

On blind faith we adopted two more little girls, a three year old and an infant with Down syndrome from a village orphanage in Ukraine. The moment Masha and I locked eyes, she burst into a smile and reached for me to pick her up. She then wriggled away and ran for the swingset. From there she rode a tricycle down the walkway, and then she took her baby stroller for a walk. A little while later she climbed into a real stroller parked on the porch and began strapping herself in.

Later on I found that Masha will brush my hair, try on my shoes, dress and undress herself, and sing into a pretend microphone. She puts her plate in the sink, carries her own backpack, plays soccer, and plays tricks on me. She feeds her dollies, enjoys tea parties, understands English, and picks berries with her brother Jade.

Life with Masha confirms what I have wondered about, suspected, worried about... that Kimani’s brain trauma changed everything for her. Thus it is bittersweet for me to know that children with Down syndrome are so very much like ordinary children.

Baby's Got Down Syndrome, 1: Lunch at Pizza Hut

Baby's Got Down Syndrome, 2: Crossing the NICU Styx

Baby's Got Down Syndrome, 3: Seeing in the Raw

This is the final article of a four-part series.

"Mommy, You Forgot..."

2011-08-15T09:07:00.001-04:00

Let me set the stage for this one...

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

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

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

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

OMG, seriously? Instant panic attack.

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

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

“No mommy, I have to go poop NOW.”

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

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

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

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

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

Dresses

2011-07-30T17:14:00.004-04:00

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

The Princess and the Poo Poo Treats

2011-07-27T13:34:00.003-04:00

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

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

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

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

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

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

Get Outta the Trunk

2011-07-09T00:10:00.007-04:00

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

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

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

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

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

Loving My Girl

2011-04-21T12:45:00.002-04:00

I told you she is beautiful :-)

There Is No God

2011-04-20T13:22:00.004-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

Lifesavers

2011-04-18T11:54:00.004-04:00

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

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

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

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

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

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

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

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

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

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

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

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

Retake?

2011-04-15T10:33:00.003-04:00

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

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

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

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

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

Enigma

2011-03-19T23:47:00.001-04:00

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

And so perhaps Kimani is the perfect child for me.

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

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

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

She is my enigma.

The Best Christmas Gift of All

2010-12-31T11:47:00.003-05:00

It happened. It finally happened. And when I heard the news yesterday, I had chills. Tears welled up in my eyes and I thought, "Oh my God, yes yes yes!"

Anya has a family. Anya has a mama and papa coming for her. Anya's life will be saved.

Thank you God for answering my prayer. (And thank you imaginary Santa for granting my Christmas wish.)

[Need to wrap up 2010 with a last minute tax deductible contribution? Donate to Anya's grant fund and help bring her family to her.]

Dear Imaginary Santa,

2010-12-11T11:54:00.006-05:00

Remember when I was a little girl and I still believed in you? I wanted things like a Geronimo doll and plastic horses for him to ride. I wanted a Hess truck with lights that really worked. I wanted Legos so I could build my own house with many staircases and secret rooms. I wanted a Magic 8 ball so that I could know the answers to all the important questions in my childish mind.

You gave it all to me, and despite the ugliness that lived with us, Christmas morning always turned out ok. But then I found out the truth... that you are not real. Christmas lists and letters are useless now.

It doesn’t matter anyway, Santa, because the things I want now cannot be bought. Like wisdom. I want perfect wisdom, to always know the right thing to do and say. I want to be filled with patience and gentleness. I want to be a great wife and mother, and a great writer.

But if only one wish of mine could be granted this Christmas, I’d ask for a mama and papa for Anya. She is a little girl with Down syndrome who lives in the orphanage where my daughters came from. Anya turns four this coming Tuesday the 14th. Anya’s time in the baby house is up.

Anya is not your typical child with Ds. Her need for support is higher than that. She is desperate for love, attention, and intervention. Anya is a child that will die young in a mental institution.

When I was there, I stole a few minutes with Anya. I held her in my arms. Anya took my hands and clapped them together over and over, making up her own game. Anya stared into my eyes as if no one had ever looked lovingly at her before. From then on, Anya would try to come to me when she saw me, but they would never let me hold her again.

I wished I could tell Anya that someone was coming for her, that a mama and papa would come to save her from her fate. I wished I could tell her that somebody loves her, and that I could promise her she will not die an orphan in a lonely box crib.

I wished you were real Santa so that you could give Anya a family for Christmas this year.

What Can't I Do Online?

2010-12-05T22:09:00.003-05:00

I can shop, read the news, make friends, pay a bill, support a cause, take a class, pick out a new daughter, defend my beliefs, earn a living, advocate for people with Down syndrome, spill my guts...

Wait... not that last one. Not so much anymore. I have written about this before and it has only gotten worse for me since then. My silence is choking me.

I can’t tell you how I feel about my step-daughter yanking my heart out and stomping on it, again.

I can’t tell you how I feel about my boss giving away my job.

I can’t tell you how I feel about the hard parts of adoption.

I can’t tell you how I lost my faith, or if I have for sure found it again.

And even if I could tell you about these things... there isn’t the time. The reality of it is that I spend most of my day filling mouths and wiping butts. I don’t even have time to tell you all the things I can’t tell you. It is probably better that way for now.

Maybe I can’t find the time because I am not ready to deal with the repercussions of honest writing. But then I ask myself, what is the sense of having a personal blog if I can’t talk about what is on my mind and staining my heart?

All right, all right then... I’ll tell you about one thing that has been bothering me. People tell me all the time that if only they had more room in their house, or more money in their bank account, that they would adopt.

That isn’t why you aren’t doing it. You aren’t doing it because it is a sacrifice of time, a huge forever commitment of your emotional, mental, and bodily resources. And you are scared... scared that the child might turn out to be full of problems, medical issues, or low functioning.

Children are freedom thieves. They enslave us with their needs. Our own darlings are worth the forbearances because they are so beautiful and talented, not to mention we know they come from good stock. But other children? Children whose mothers may have smoked crack while they were forming? Children with congenital birth defects? Children who may not know how to love you back?

Hell no, there just isn’t the space in your house for that.

Anyway, being bitchy about it isn’t going to change your mind. So I will tell you a secret, adopted kids are fascinating. And they teach you that love equals action.

And I will tell you another secret. It is ok with me if you don’t want one. You don’t need to explain.

The Child I Like Best

2010-12-02T07:52:00.000-05:00

Parents are not supposed to love one child more than another, or so I have been told. At least they shouldn’t admit to it anyway.

But I can’t help it. There’s love and then there’s love. I have five children now and I love them all. I mother them all equally. I discipline them fairly and consistently. I treat them all the same. But one of them is more endearing than the others.

In truth, I think this happens quite often in families (though most parents are smart enough to follow the “don’t ask, don’t tell” rule on this topic). Maybe for you it is your oldest, the one who has been around the longest and had that early time as the only child. Or perhaps it is your baby, who will always be your sweet baby. Maybe it is your only boy, or your only girl.

When the French say “I love you”, they say “Je t’aime” and when they say “I like you”, they say Je t’aime bien”. Their word for love is the same as their word for like, and when they emphasize love by adding the word “well” to it, it becomes like. So maybe what I really meant to say up above is that there is love and then there is like.

One of my children is very very likeable. This child has a great unintended sense of humor. This child is thoughtful and sweet. This child is bright and engaging. This child is beautiful and smells delicious. This child is very able to express love and affection. On the flip side, this child is rarely annoying, contrary, or miserable. Lacking difficult-to-deal-with characteristics goes a long way.

It doesn’t really matter if it is ok or not for me to like this child more than the others... it doesn’t matter if it makes me an imperfect mother. It is what it is.

Regret

2010-10-12T10:21:00.002-04:00

Before Kimani I lived a life with no regrets. It’s not like I hadn’t made big mistakes, hurt people and hurt myself, but I never yearned to go back and change anything.

Now I ache, I wish, I wonder... if only. If only I could go back and say no. No feeding tube that would eventually lead to bacterial meningitis. No CV line in her thigh, a procedure that would go awry and lead to an intense 106 degree fever and a heart rate off the charts.

Because one of those two evils stole my child.

Cortical vision impairment... the eyes can see but the brain cannot interpret... the processor is broken. Legally blind. I try to imagine her world... what it is like to see but sometimes not know what you are seeing.

Sometimes when she wakes up and is still in her crib, I know she doesn’t know I am there. She is looking right through me. I say good morning and whisper her name. She looks for me but her eyes do not find mine. I reach down and stroke her cheek and she wraps her little hands around my wrist. Ah, now she knows where I am.

But there is more to it than that. How much more? I don’t know and neither does Google. I have searched for answers, for others like us but I find nothing, no one. The results are terrifying and vast... brain damage, mental retardation... but no specifics, no list to check her off against, nothing to compare her to.

I can never go backwards, only forward, only onward. Perhaps to a pediatric neurologist who can tell me what I need to know. Maybe a fancy machine can see inside her head and tell me what is best for her.

And as for me and God, well I don’t know. I doubt he is going to tell me why, because after all, I already know why... shit happens. Maybe he will ease my regret and bring me peace, or maybe he will perform an old-fashioned miracle and heal her.

Or maybe nothing, maybe I’ll feel this way forever.

Pre-Wedding Jitters

2010-08-30T05:45:00.002-04:00

Adopting a baby is very much like having a baby and now I think I know what guys feel like. Your body doesn’t change... you don’t feel the baby growing inside of you. You spend your days preparing for the arrival of a new little someone to love and then one day they place a bundle in your arms. Congratulations, it’s a girl.

It is a baby that knows nothing of the world, who has no loves before you, no life beyond you. A baby that can’t jump up and run off, a baby who speaks no language but that of affection and nurturing.

Adopting a child is like getting married. I remember diving in, terrified, saying I do when I wasn’t sure I could. I had never experienced a successful marriage and wasn’t sure the concept was really doable in real life.

Masha is not an infant. She has a life. She sings in Russian or maybe its Ukrainian... I don’t even know the difference. She runs away. She has a personality. She loves people I have never met. She doesn’t know me nor does she know what a mother is.

In a week or so I will “marry” her. I don’t know that she even wants to be married. It is best for her... it will change her life, but what does a three year old care about the future?

I have my dress, the invitations have been sent, the church has been rented. I am going to walk down the aisle, I am going to cry when I say I do. I know this story, I have been the bride before.

And just like the first time, I am scared.

Lost in Kyiv

2010-08-24T16:03:00.002-04:00

We aren't really lost, at least not at the moment...

We are in Kyiv though, in case you are wondering why I haven't posted anything profound here in a couple weeks. If you are interested in reading about some of the great experiences we are having here, you'll need to head over to our adoption blog.

I thought I might be able to keep this blog up while we are away, sort of the B-side of Kyiv, and there are plenty of posts and pictures to keep you entertained... but I just don't have enough hours in the day.

So even if you aren't the least bit interested in our adoption (and please don't admit that to me) you may want to go see what else we have been up to in Ukraine.

The Wrong Orphans

2010-08-10T12:17:00.006-04:00

It has been said to my face but more often behind my back with a hint of disapproval and a dose of disdain... that old standby response when people hear that we are adopting two orphans with special needs from another country...

“There are plenty of children in the United States that need adopting.”

What exactly are you trying to say? I know what the words mean, but I want to know what this statement, made under the circumstances of hearing about our adoption, means.

Are you saying we picked the wrong kids to rescue?

We are forever sacrificing our time and resources to save two orphans who are doomed to a life in a place worse than where we send our most violent criminal offenders, and you have the balls to critique us with a, “there are kids in the USA that need to be adopted”?

For real? You have something negative to say about us saving the lives of two innocent human beings? Seriously? You want to dicker with me about who deserves to be adopted and... who doesn't? You really wanna go there with me?

Listen, if your heart doesn’t break for children with special needs who are living in terrible conditions and facing even worse... If, for whatever your reasons are, you don’t want adopt one or help me save the two children we chose, that is ok. But don’t try to turn it around into something bad just because you don’t want to be a part of it.

And one day when God says to you, “For I was hungry and you gave me no food, I was thirsty and you gave me no drink, I was a stranger and you did not welcome me, naked and you did not clothe me..." you can answer, “Sorry ‘bout that Lord, if only you had shown me your American passport.” Mat 25:42-45

The Things I Do For You

2010-08-07T22:22:00.003-04:00

It is a risky thing being a blogger. You put yourself out there for all the world to see, analyze, judge, decide to follow or not... You say things to whoever is willing to read you, and sometimes you get hurt, anonymously of course.

Around here, there is more than just my emotions and reputation at stake... because while I am busy writing (for your pleasure and edification) my son Jade is busy concocting...

His grandparents bought him a cookbook for Christmas and now he fancies himself a gourmet chef. This morning when I came up from my basement office for a drink refill and to check on him, I found him standing on a chair pulled up to the stove, stirring a pot full of everything he could reach.

“I’m making nail stew for Gecko’s birthday,” he told me cheerfully.

(Nail stew... my bad. Jade will not let anyone clip his fingernails so a while ago I made up a story about needing them for fingernail stew. He graciously allowed his father to cut one off for me to use in my stew. Gecko called me out on it insisting I was lying about eating fingernails... so I popped it in my mouth and quickly swallowed it down with a “Ha, I am NOT a liar.” Now Jade brings me his nails whenever one breaks or his father has at it with the clippers.)

Want the recipe? Water, ice cubes, potato chips, corn toasties, butter, balsamic vinegar, agave, coffee, cinnamon, salt, half an Oreo, two eggs, and Cheerios. Oh, and a handful of freshly cut little boy fingernails.

So far I have evaded having to taste test it. Although he did. (Thankfully it was before the addition of the eggs.) He spit that mouthful right back into the pot with a grimace, and then told me it was delicious. But come tomorrow morning I am going to have to lie to him... He is going to want to know where the nail stew went and I cannot tell him that I threw it out. That would hurt his feelings. It might permanently damage the budding cook inside of him. I am going to have to say I got very hungry and ate it all up during the night.

I’ll bet you had no idea of the things I have to do to spend time with you reader.

Fundraising Sucks

2010-08-03T17:31:00.003-04:00

There, I said it.

If you have read my blog for a while, you know I love my lattes, so much so that they are what I gave up for Lent this year. Now I have given them up completely. I mean, I have given up professional, expensive Starbuck’s made lattes. I have learned how to make my own cheapo version on my stovetop.

Why? Because when we realized that we would have to do some fundraising to save both our little girls, I knew it would not be right to continue to spend money on such wasteful luxuries as lattes. I thought that would be the most painful part of fundraising.

But it isn’t.

Asking people to donate money toward something huge like the adoption of two international orphans with Down syndrome is the most uncomfortable thing I have ever had to do. Seriously, it is even more humiliating than having my first baby... up on a table with an audience staring at my goods, which didn’t look so good just then.

I tell myself that the CEOs of Feed The Children, Heifer International, Smile Train, and Children International don’t feel like crap for asking for donations to save children from horrendous life conditions... so why do I? They probably haven’t even given up Starbuck’s.

The Dead Mouse

2010-07-30T21:38:00.006-04:00

When I was a child, I adored field mice. I would rescue them from the cat and doctor them up. ICU was our bathroom and the recovery room was a shoebox in my bedroom. I would put fluffed up cotton balls in there for a comfy bed, and milk-soaked white bread in an upsidedown jar cover for nourishment. Many a mouse had nine lives in our house.

One morning I found the cutest mouse ever, already dead, in the driveway. This mouse was a chocolatey brown color with soft fur. He had something really special about him I had never seen before... the most amazing black wings fitted right to his little arms. He must have been an angel mouse.

I scooped him up and ran him right to the front door to show my mother. To say that she screamed would be an understatement. You would think I had delivered the devil to her. “Get rid of it, don’t touch it, drop it.... It’s a BAAAAAT!!!”

I have no idea what my six or seven year old self did with that dead bat... the memory ends there on the cement steps with me trying to understand why my darling dead mouse was so horrible.

Fast forward many years... I found another “mouse with wings” in my driveway...

Ahhhh, I get it now.

I have been trying to figure out if the mouse/bat in my memory really did look like this one. How could I have thought he was adorable? Sometimes I really miss that schema-less little girl.

Whose Blog Is This?

2010-07-28T15:17:00.002-04:00

Earlier this month I wrote a post about honesty and writing, trying to decide for myself if it matters that the blogger’s truth is usually blurry. I left off thinking it probably doesn’t matter.

But what about when the blogger’s truth is silenced, subjugated by the fact that readers might be hurt, or pissed. When a blog is anonymous, the you isn’t you reader, and so the author can talk about you all she wants.

But this blog isn’t really anonymous anymore, so if I use your marriage, my job, or something you said, did, or didn’t do as fodder, well then reader, I might actually be talking about you, and you would know that, and you would probably not like it.

And then I would be in trouble.

Over the last week I have written posts, and then not posted them. I’ve written about things that I am struggling with, things that are hurting me... For the first time since I started blogging I have written in blood and then decided that I cannot publish my words.

My blog is not my own anymore. In a way it belongs to its readers... it is held captive by their feelings, their judgements, their sensibilities... You stranger are not a stranger anymore, and now I just can’t talk to you the way I used to.

The Angel Sleeps

2010-07-11T12:55:00.000-04:00

There are times when I just want to eat her up. I mean really, doesn’t she just look delicious?

Acceptance

2010-07-10T12:00:00.003-04:00

What does it mean to say that I accept that Kimani has Down syndrome, or that I accept her as is? And, is acceptance the same as being “over it”?

First I contemplate the definition of acceptance...

1. the act of taking or receiving something offered.
2. favorable reception; approval; favor.
3. the act of assenting or believing: acceptance of a theory.
4. the fact or state of being accepted or acceptable.

Well, I didn’t abort her or give her away, so I would say number one is a go. Seeing how I adore her, and think she is an interesting and fun child, 2 is good. I knew the second I saw her that she has Down syndrome, and an unnecessary blood test performed by the hospital proved this, so clearly I believe and accept that she has Down syndrome.

Number 4... hmmm.

My husband and I were driving along one day last Fall when I told him that the dentist said Kimani is missing teeth. I was surprised that he was bothered by this. I pointed out that it isn’t like she was missing a ventricle or something, I mean it’s just teeth. You can buy those. And he was quickly assuaged. Missing teeth... acceptable.

But what about the delays? Our Baby’s First Year calendar is now a first three years notebook. I can handle that. In fact, there is a certain thrill and rush of pride that comes every time she does something new. You know how you feel when your kid scores the winning goal at the soccer game? I feel like that each time she uses a new sign or says a new word, or shows off a new motor skill.

So far so good. Now I will take a deep breath and go one step further.

Eventually time will show that delays are no longer just delays, that there are other things missing... things that cannot be bought. If she is at the top of her class those things may be minor and not so painful. But if she is a typical design, then there will be things... bigger things... things I don’t even want to put into words right now.

Oh, I know there are a lot of years between here and there, and that when it goes day by day it is easier to find these things about her “acceptable”. I have faith that I will always find her to be acceptable to me in the present.

Acceptance... I think I’ve got it covered and can safely say I am there. But am I over it? When she is grown, and she is who she is, and I make peace with that, then I guess I’ll be sure that I’m over it. But for now, I just don’t know.

(Moms of older kids... are you out there? Talk to me.)

Honesty, Authenticity, and the Pursuit of Truth

2010-07-08T21:33:00.004-04:00

“I love your honesty.”

I like that comment, and I have gotten it a couple times after I left some blood and guts on a post or two. When I read that type of comment, I think maybe, just maybe, I successfully reached a place in myself that is the most authentic part of me. The writer in me would like to go there more often.

One time a person commented on my “We’re Not in Kansas Anymore, Toto” post and told me that maybe I wasn’t being honest. That person had read around this blog and felt what I like to refer to as the undertow of a blog. The undertow, the part I didn’t know that I wrote, or perhaps left out, and the supporting pieces that often have their own unintended message. That person was very perceptive, and challenged a belief I have that isn’t set in stone.

Starrlife just wrote a post titled, Blogging is Not Journalism 2
about another blog author’s post titled Truth in Blogging...

“Does it matter if truth creeps into fiction or fiction creeps into truth?”

“I like blogs that have that authentic feel, that grain of truth that is universal and transcend this issue. I like to think I can perceive those blogs. Do I? Can you?”

I am guessing that many of us have different motives for blogging, but most of those motives likely have something to do with authenticity, honesty, or truth... all different birds indeed. We have something to say, something we believe to be true, and we want to share this truth in order to have some effect in our sphere of influence.

But what if something in your blog’s undertow tells a story that is different from the one you are intentionally writing? What if you hear “I love your honesty” and “I don’t quite believe you” after the same post? What if someone questions the truth of some of your personal claims? Can one be honest and authentic but perhaps blind to certain truths? And does it even matter what is personally true and what isn’t, so long as the writer is being genuine and having a positive impact?

Most of the time I don’t think it matters that a writer is rarely able to completely pull off Shakespeare's “To thine own self be true” advice on a personal blog. As long as you mystify me, rock me, make me think, or drown me in beauty... I am happy to have visited you.

But what if your undertow is beginning to separate a group of people that I am very plugged into and proud of? I guess I then become one of those commenters who asks you to dive into it and see where it takes you.

(I would love for this to be a conversation but no unsigned anons for this one please.)

Little Boys and Fireworks

2010-07-06T20:10:00.002-04:00

Yesterday I blew up the baby pool. Well, I started to, and then felt woozy so I went to the neighbor’s and borrowed an air pump. I couldn’t wait to get in the pool with Kimani.

What a cute little pool... the roof makes hanging out in it bearable for Kimani. I was looking forward to delightful days with the little ones splashing around... and chewing on it.

And then my husband spent the evening igniting fireworks while the boys ran around with sparklers. “Stay away from the pool!” I warned once, twice, at least five times.

Have you ever seen two little boys jacked up on explosives? No? Well, let me show you what the results look like...

In The Moment

2010-07-01T08:00:00.003-04:00

“Be in the moment,” Anonymous said, and I listened.

So now maybe this...

will remind me of this...

D.O.A.

2010-06-30T08:09:00.006-04:00

When I was 15 years old, I killed myself. One could say it was accidental but then one might be lying. Looking back, it must have been a very upsetting and even humiliating experience for my mother. Sorry mom.

Why did I do it? Oh, what a complicated question to which there is no simple answer.

The door was open. It has always been open for as long as I can remember. And one day, I just stepped through it.

I have been asked what I saw on the other side and the answer is nothing. Perhaps an overdose of drugs and alcohol blots out the shining light...

I saw nothing, but I learned something... Death answers to God.

(God was kind enough to remind me of this yesterday at our staff picnic. A friend mentioned that he had once died... and suddenly I recalled a day long ago, a day I had almost forgotten, a day that taught me that God calls the shots, not me.)

The Open Door

2010-06-29T09:45:00.003-04:00

I feel this poem...

Death Barged In
by Kathleen Sheeder Bonanno

In his Russian greatcoat
slamming open the door
with an unpardonable bang,
and he has been here ever since.

He changes everything,
rearranges the furniture,
his hand hovers
by the phone;
he will answer now, he says;
he will be the answer.

Tonight he sits down to dinner
at the head of the table
as we eat, mute;
later, he climbs into bed
between us.

Even as I sit here,
he stands behind me
clamping two
colossal hands on my shoulders
and bends down
and whispers to my neck,
From now on,
you write about me.

(From Slamming Open the Door by Kathleen Sheedar Bonanno. Copyright © 2009 by Kathleen Sheedar Bonanno. Used without the permission of Alice James Books and so I hope you go buy a copy so they don’t send me to prison. All rights reserved.)

She knows what I know, only she knows it better than I.

Death opened the door and I cannot get it to close all the way.

It doesn’t seem to matter that Kimani is a healthy 25 lbs. of sheer power and joy. It doesn’t matter that she has 21 signs and says things, and can almost walk. It doesn’t matter that when she eats peaches or berries or watermelon that the sweet juice bursts forth and trickles down her chin. Even her wild laughter cannot bolt the lock.

I can see him, I see the shadow he casts from that thin crack of space where the door is still slightly ajar.

“Go away,” I yell at him pushing hard against the smooth cold wood. My efforts are futile and he is nonplussed, still tossing golden coins in the air.

The B-Side of Summer

2010-06-28T14:36:00.001-04:00

I used to love my flowers. They reminded me of summertime, carefree days and warmth. But now my brain has tangled them with imagery of my baby suffering. I can no longer disassociate this blooming flower...

from these bruised flowers.

And when the hot sun, that I used to love, beats down on me I think of how her mouth and nose looked when I would come back in the mornings. No mercy from the imaginary sun that dried her lips into rock candy and caused her nose to bleed.

The smell of fresh cut grass tells me that today there may be some skin missing or an infection brewing.

As I watch the ants coming and going, all over their little hills,

I see the needle pricks. Once, after her surgery, I counted 47 holes in her wrists and upper inner thighs... and then I stopped counting. With nothing left to hit on the outsides, it went in under her armpit.

I debate whether I should destroy the pictures and burn her accoutrements. Will summertime return to me anew if I do?

Maybe you should talk to someone my husband says. That is why I write, I say.

Can a Broken Heart Forget?

2010-06-27T18:51:00.002-04:00

Two years ago last Friday she came and rocked my world. I had already been around the block a time or two. Lived through parents’ divorces, beloved boyfriends cohorting with best friends, surgeries, and plenty of bad news. But as Hillary Johnson put it, I had never really learned to cry.

Oh, but I did learn how then. I learned that nothing, nothing hurts like losing a child. In the end, as you know, we got to keep her. But there is this little part of my heart that doesn’t believe it, that can’t trust it, that won’t let me forget.

A Very Special Gift

2010-06-18T10:03:00.002-04:00

Ruby’s big brother Grady has an amazing ability to draw. He has decided to use that talent to help save Yana, a little girl in an Eastern European orphanage who has a family committed to her. Grady is donating a custom 5x7 single subject drawing to the winner of Yana’s 100 Good Wishes fundraiser.

Here is how it works. Donate any amount to Yana’s 100 Good Wishes fund and you will be entered to win. Once the 100 wishes are filled, Lisa (Yana’s mama) will put all the donor’s names it a hat and select a winner. The winner gets to send a photo to Grady and he will create a gorgeous, one-of-a-kind graphite pencil drawn replica of it. This gift is valued at $100.

Don’t miss your chance to win something special from this up and coming amazing artist. Check out more of Grady’s work on his blog, The Way of the Pencil.

Straight from the Horse's Mouth

2010-06-14T21:41:00.004-04:00

800 children and only 40 childcare providers, whew. No wonder they only get one or two diaper changes a day. Pay close attention to the part about what happens to the children with Down syndrome. This is why we are saving Mallory and Peach.

Dear Anon, Now That You Mentioned It

2010-06-13T21:47:00.008-04:00

I’ll speak to your comment (left on my last post) in the order that you mentioned your concerns.

1. As far as I know there are no children in this country dying of starvation and dehydration tied to metal cribs in mental institutions. If I am wrong, and you know this for sure, please hang up and dial 911 and direct the authorities to the scene of the crime.

I have not forgotten the children in my own backyard, I just haven’t seen any there that need me to adopt them the way these girls do.

2. I wish the US made that its calling. If so, the world would be a better place.

3. There is a waiting list to adopt a child with Down syndrome in the United States. There are over 200 families waiting at any given time. Most of these babies don’t even make it into foster care and are snapped up right at their hospital of birth.

4. If you have a bed and food, and medical insurance, you should adopt those children that you know need it. Saving a child’s life has nothing to do with national borders. If you and everyone who felt like you do adopted a US child out of foster care, well we wouldn’t even need foster parents anymore! I look forward to following your adoption blog, please post a link for us.

5. It is actually 25 thousand dollars, plus 5k more for the second one.

6. We can afford to raise two more children. Our finances have been gone over and proven to an accredited agency that has recommended us as being able to provide a good home and a bright future to two more children.

7. We do not have 30 thousand dollars laying around, ‘tis sad but true. If you donated, we’d get it faster though ;-)

8. The worst kids of all? As judged against what criteria? Well, no worries, we had to prove that we carry private health insurance before we were approved to adopt... so your precious medicaid system is relatively safe from my little raiders.

9. Thank you for bringing this all up and giving me the opportunity to talk about these things.

Anonymous is not alone. Anonymous is not the first person to hint around (ok, so anon didn't hint) that what we are doing... well... might cost American taxpayers money someday. Money taken away from you by our gov't and spent on people with special needs. Well, yeah, the possibility is there, and I’m sorry about that. Hopefully our trust will always provide for our girls, but if it doesn’t, I ask you now to forgive me for saving their lives.

Am I Crazy?

2010-06-12T11:22:00.010-04:00

Many many people have asked if my husband and I are nuts for adopting two Eastern European orphans with Down syndrome. They try to say it in a joking manner, but they are implying that maybe this isn’t such a good idea.

Mallory is three years old. On her 4th birthday she will be institutionalized. Have a look at her future.

I am not exaggerating. Read all about it here.

Am I crazy? No I don’t think so. Can you look at that picture and read that post and do nothing to help the families who are willing to take these children? Can you turn away and forget what you have seen? Are you crazy?

If 1000 people throw in just $25 each, one less child ends up tied to a metal crib for life. We need your help to save these children:
Mallory and Peach

Yana

Makayla

Josiah

Want to do even more? There are lots of families on Reece's Rainbow who are in the process of saving orphans. Go visit them and show them some tax-deductible love.

The Wrong Impression

2010-06-11T09:53:00.003-04:00

If you left my Rescue Me post thinking my church is filled with cheap hypocrites, then I gave you the entirely wrong impression of the few thousand people that attend there. Just as every human being has weaknesses and imperfections, so does a body of people, even those who love Christ.

My church actually spends about three hundred thousand dollars a year on missions. That is a very generous number. It is just that we do not have an orphan adoption ministry and that really needs to change.

And if I stood up in front of my church during all three services one week and made a presentation of what we are doing and asked for help, I have no doubt that our congregation would rise to the occasion and I would probably even have tons of money left over to give to other RR families who are adopting. (Unfortunately, I wouldn't be allowed to do that sort of thing.)

So don’t get me wrong, my church is filled with true Christian people... it has just become a little too corporate, a little too about itself and its corporate mission. This experience has made that clear to me. That is the discomfort I have been struggling with for a couple years now. To me, there is no more personal family-style church left in my church.

But I promise you God is there.

Doubting TUC

2010-06-10T08:41:00.003-04:00

Have I ever told you that I am not the most faith-filled Christian? Yes, well, I am not.

I swear God told me it was time to adopt a child. I felt it. I prayed about it. I was pretty sure He said to do it, but it isn’t like there was a burning bush in the back yard or anything.

As often happens to me, I will get partway through doing something and I will begin to doubt God’s presence in it. This is especially easy for me to do when my church isn’t formally supportive, and when my father begins to question me, when the funds don’t appear, and when people send me emails hinting around that this adoption thing isn’t a good idea.

I start to think, OMGoodness, maybe I made it all up in my head. Maybe God didn’t say anything to me at all. Maybe I am crazy. Maybe there really is no God. Yes, I am a perpetual doubter. I panic and then I worry that my mistake will haunt me forever. Dramatic, eh?

And just when I started to feel sick to my stomach about the whole affair, my sweet Lord sent me a gift, a reminder of his promises, of his word, of his love and support. It came late last night while I was perusing blogs. I stumbled upon a video of a missions trip to an Eastern European orphanage. In web time it was long, eight whole minutes, but I clicked start anyway. And then it happened, she appeared on a swing, full of smiles. My heart skipped a beat and I backed it up. Was it really her? Was this possible?

That was the gift but not the reminder of his will for me. No, the reminder was the verse that was posted right at the end of my girl’s scene,
“Truly, I say to you, as you do to one of the least of these my brothers, you do to me.” Matthew 25:40.

If you have been reading my blog for a while, you might remember that is the verse that God used to prompt me toward adoption. I felt a physical swoop of joy and thankfulness when I read it there and my doubts melted away.

5:21 and 7:27, isn’t she adorable?

Rescue Me

2010-06-08T19:26:00.006-04:00

I’ve been feeling uncomfortable disconnected disappointed disconcerted with my church for some time now. It started during my pregnancy for Kimani and it has grown into a nagging feeling that I cannot shake.

I probably could have managed to ignore it if not for the picture, titled Rescue Me, that appeared in the upstairs hallway. I have to look right at it each time I exit the stairwell to go down the hall to my office. It is under copyright so if you want to see it, go look.

It is a picture of part of a child’s face, an obviously non-American child, and on it are the words,

“As the body of Christ our greatest crime against humanity is our indifference and indecision towards the cultural problems we are faced with. This tolerance lulls us into a state of limbo that kills action. Without action there is no rescue. For some, without rescue there is no hope. You can be that hope, you can be that rescue."

It immediately makes me think of orphans that need to be rescued. You might think it is wonderful that our church feels so strongly about this sort of “cultural problem” that such a lovely reminder was chosen to hang on the wall, but...

When God called us to adopt an orphan who without rescue would have no hope in this world, we were shocked to find out the cost of an international adoption. I felt ill as I read the sheet of impending expenses... document fees, required donations, court costs, facilitation fees, translation costs, attorney fees, travel expenses... It was overwhelming and insurmountable.

Then an amazingly generous donor appeared and offered to cover two-thirds of the cost but only if other donors could be found to raise the remaining funds. We were thrilled. We knew we could raise the rest. After all, we are part of a huge church and we have zillions of friends and family and acquaintances who all love God and care about orphans.

Our first stop was the church. My husband met with the appropriate leader and explained our mission to him. He asked for any financial support our church might be able to give. He was told that our church doesn’t assist with adoptions, that the elders have not approved that sort of benevolence.

I admit, I was stunned. We are not an infertile couple seeking help to adopt the perfect Russian doll. We are just an average family seeking to do God’s will to rescue two children facing life in cold hard hopeless institutions. My heart was hurt that our church of all these years showed “indifference” toward this very real “cultural problem”.

And then the fine art print appeared in the hallway and now I can’t ignore my feelings anymore but the problem is... I don’t know what to do with them.

Saying Yes Is Hard

2010-06-06T12:00:00.008-04:00

Sometimes I know what God wants me to do but I am not ready to do it. Like when he wanted me to get baptized and I pretended not to listen for about a year and a half.

It has been a while now that I have known that it grieves God’s heart to see the fatherless left to suffer and die. No doubt I first heard about that in Sunday school many years ago, and certainly there have been refreshers along the way.

Then Kimani was born and a new world opened up to me, a world where children like my little beauty are left in orphanages, without necessary medical care and therapy, without affection and comfort. A world where four year olds are shipped off to mental institutions where the lifespan inside those walls is less than two years.

I don’t exactly remember how I found Reece’s Rainbow but I do remember how I felt when I looked at those little faces, those eyes, eyes like Kimani’s, eyes asking to be saved. I felt the squeeze in my heart. I knew the day would come that I would travel halfway across the world to take one of those babies home to safety.

We were not in a position to adopt a child. Our house is full. We do not have an extra 30 thousand dollars sitting around. I already cook a lot and do a ton of laundry and change many beds. As parents we are already stretched. But one day in February as I was perusing Reece’s Rainbow, God whispered in my ear, “It’s time.”

And though saying yes to adopting was a hard thing for us to do right now, we did not bother to waste time protesting. With that said, let me introduce our daughters-in-waiting...

Mallory
Mallory is three years old and currently living in an orphanage in Eastern Europe.

Peach
Peach is seven months old and lives in the same orphanage as Mallory though it is likely they have never met. Peach has a very serious heart defect and needs to get home soon so that she can have life-saving surgery.

There is a lot of story between February and now, and I will share it when I get a chance on our adoption blog. There you can read more about our girls, and our adoption adventures.

The Man Bag

2010-05-07T13:18:00.002-04:00

I bought my six year old son a pocketbook. It wasn’t easy.

Tuesday night after dinner, I announced I was going over to the mall to find a nice organizer bag to go inside my new big black pocketbook. My husband gave me that look, the “You’re going to leave me home with all these kids during the bewitching bedtime hours?” So I took the Gecko with me to lighten the load for him.

We headed straight to the Macy’s purse displays. Mmm...delightful... Guess, Nine West, Fossil... We snapped, zipped, flapped, stroked and sniffed. We admired, explored, examined, and counted pockets. I favored a Giani Bernini black, shiny, soft nylon bag with a gorgeous royal purple interior. Gecko wanted its red twin, but not before he pleaded for a black flower-embossed Fossil wallet, a leopard print triple zipper bag, a bright blue leather sac, and a screamingly shiny black Guess satchel with a couple pounds of silver bling on it.

How could I say no? No, Gecko, you can’t have one of these fancy bags with cool hidden pockets because you are a boy. I couldn’t bring myself to say that, so I told him what a man bag is and said we would hunt around the mall until we found the perfect one for him. We hit up several stores and all the while I hoped he would become distracted by something else that I could use as a diversion. Maybe he would then choose on his own not to get a pocketbook.

But he was determined. I guided him away from the sequined evening bags, pointing out how they don’t have enough pockets. I reminded him that pink, silver, and yellow will not match most of his wardrobe so we should stick with black or brown. He finally settled on a black and gold mid-sized bag with front pockets, a back zipper, top zipper, and an inside zip pocket. He carried it up to the counter and proudly gave it to the cashier. She made some comment about how she thought he was carrying his mom’s pocketbook, and I thought, “So it begins.”

We asked her to cut the tags off because he wanted to use it right away. On the way out of the store he swung the bag high over his head and said, “Mom, when I become a soldier I am bringing this bag with me. I am going to fill it with rocks and BAM somebody with it.” Lol, that’s my boy.

Don't Try This At Home

2010-05-05T08:15:00.002-04:00

Seriously, this trick is being performed by a professional. You will hurt yourself if you try to sleep like this.

The Worst Kind of Mistake

2010-04-29T12:21:00.003-04:00

“A Florida OB-GYN who was supposed to abort a fetus with Down syndrome in a twin pregnancy but leave the normal one alone made the worst kind of mistake.”

I’ll bet you can guess what the oopsie was.

I must be really jaded about this issue because I snorted a half laugh and half humph after reading the article in the Miami Herald. I couldn’t help it. The sick irony of the whole situation sent me over the edge.

This couple wanted a child bad enough to hop through the in-vitro hoop, and they got twins out of it, a boy and a girl... two for the price of one. But, oh no, one was “not normal.” One had Down syndrome and was therefore scheduled to die.

But then uh oh, Mr. OB-GYN accidentally injected the wrong baby... and when you kill the wrong baby there is hell to pay. You can lose your license to practice medicine over such a mishap. The doctor felt really bad about it (not sure if “it” was losing his license or killing the wrong baby.) He said he was going to kill himself over it and ended up involuntarily hospitalized. (You can kill babies but not yourself, I guess.)

And what did the mom and dad learn from this mistake? If at first you don’t succeed, try try again. A week later they had the little guy with Ds injected and ended the whole nasty affair.

I feel sad that when it is all said and done, the worst kind of mistake means something entirely different to me than how it was written in the article. And I feel sorry for that couple, sorry for them in ways I can’t even explain.

What She Saw There

2010-04-08T10:17:00.004-04:00

"We showed up unannounced one day at the orphanage. All the children were in the big wooden playpen. They were all tied to the slots of the playpen so they couldn't move. No wonder they didn't want us to come in the room." - Jodi

They spend the first four years of their lives in these orphanages, then the rest of their lives in mental institutions.

It does not have to be that way.

Say It

2010-03-24T09:47:00.003-04:00

I remember when I couldn’t say it without choking up. I couldn’t get it out without the heat rising inside of me... I couldn’t say it without feeling like I might crack wide open and my guts would fall out on the floor.

Maybe if she had been born with no heart complications, maybe if she had nursed from the start like a champ, maybe if I had been able to take her straight home to her beautiful nursery.

Maybe if someone had captured gorgeous pictures of her in fancy baby girl lace, instead of decked out in wounds, wires, and tubes...

Maybe if I could have convinced myself that she was a Rockstar, that she would be the One to break the mold, that she was going to be different... that she was more special than special. Maybe if all my friends and family had played along...

Maybe then I could have said it without shaking,

"My baby has Down syndrome."

But none of that matters anymore, because I can say it now. I can say it with ferocity. I can say it with dignity. I can say it with love.

But most importantly, I can say it with indifference.

In Today's Mail

2010-03-15T15:39:00.003-04:00

Dear Mrs. Easter Bunny,

You’re so beautiful and sweet and smart. Your tail is the fluffiest tail I’ve ever seen, and I can tell looking at you that you really do love me, even when we fight. Your hair looks fantastic, even when you’ve just gotten out of bed. You don’t need makeup, you’re covering the most beautiful face under it.

And of course, your amazing cooking. You’re so creative with your food, your scrapbooking, it’s great. And I really do appreciate all the time you spend with and for me. Thank you, Easter bunny. You have given me more than candy could ever give me (but candy would still be nice).

Easter wish list
Gift card to the artist store, mp3 player, JellyBelly Jelly Beans, fancy leggings, Bic mechanical pencil, G2 07 pen, rubber bands, orange Cadbury eggs, and paper.

Love, TK.

(Lol, I love my teenager.)

Blood Brothers

2010-03-12T20:18:00.001-05:00

As a kid there were a handful of times that I cut my palm and smushed it against a friend’s matching wound to seal our alliance. Only the coolest, most trusted buddies became my blood brothers this way. Then the Eighties brought aids to light and my sanguinary relationship building came to a halt.

I had all but forgotten about that ritual until the other day when a blogger I know only through our various online relationships made an extraordinary promise to me. She pledged to make a modern-day blood sacrifice that will be added to my own personal sacrifices to accomplish something that will be life-changing.

We are blog sisters, friends, mothers, advocates, and educators walking down the same road of life together. Her son and my youngest daughter brought us together in this exclusive, invitation-only club. She knows certain private details of my life that are written on my heart because she has read them off her own. She recognizes my pain, and feels my pride. She dreams my dreams and wakes from my nightmares.

One simple genetic hiccup has given me a new sister, and she is worthy of a bloody high-five.

I’m Supposed to Save Who?

2010-03-10T20:45:00.011-05:00

In many ways my church is evangelical... we want to go out and save as many people as possible. We want to show people the way to God, encourage them to take next steps, and train them to become mature followers of Christ. We want to grow the body of Christ... to make more and better disciples.

Why? Just so they can fill our seats at weekend services? So they can tithe ten percent to support God’s work? So they can be Godly examples to others? So they’ll know the “right” way to vote when it comes to abortion?

I’m doing my part. I work for the church. I tithe as I should. I am involved in a bible study and I pray for my unchurched friends... Wanna see?

Dear God, I pray for my friend so-and-so, that she will come to know and love you. I pray that she will be saved and come to church. I pray that she will become like me... that she will write blog posts about you, that she will model your love in her marriage, that she will sing in the choir and volunteer in the Sunday school nursery. All this, Lord, so that she can become Christ-like, like me and then pray for her friends to become Christ-like, like her. Amen.

Lately His replies are way off topic... “Give justice to the weak and the fatherless; maintain the right of the afflicted and the destitute. Rescue the weak and the needy; deliver them from the hand of the wicked.” Psalm 82: 3-4

What?!!

Come on God, you’re not serious... are you? You want me to go rescue afflicted, destitute orphans? Don’t you think me working for you, me tithing my ten, me leading a bible study, and praying for those in need is enough? Sheesh. Can’t I just pray that somebody else takes up that cross?

And the King answered me, “For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me... Truly, I say to you, as you do to one of the least of these my brothers, you do to me.”
Mat 25:34-40

p.s. Oh Mel-an-ie, La la la la la...I’m not listening to you.

"Will God call you to lead a Bible Study while He calls others to adopt orphans? No. As long as there are orphans in the world, we are ALL called, because these children deserve to have a family and a chance at life; they need to know God loves them. If every Christian family in the United States adopted only one orphan, we wouldn't have an orphan crisis around the world, and many Christian families have room for one more child in their homes. I firmly believe EVERY believer is called to care for orphans unless you are aged out of the system, are financially limited or have a physical condition that prohibits you from adopting.....and in those cases, you can still help raise money to assist others in adoption.

Some of my words may be tough to digest, but I am sickened by the prejudice against the orphans.....especially the orphans with Special Needs. For goodness sake, they are children. They are children. They are children. They are children. We cannot turn our heads and pretend it is not our problem."

Ok, seriously Melanie, I am listening. In fact, the whole "Will God call you to lead a Bible Study while He calls others to adopt orphans?" line is what inspired this post.

Man Feet

2010-03-03T06:56:00.010-05:00

My son the Gecko is my first born child. I tend to baby the Gecko a bit... on school mornings I dress him either while he is still half asleep snuggled in his bed, or while he is at the kitchen table enjoying his breakfast. It is a ballet dance between us as he automatically presents an arm or foot just as I am slipping on a sleeve or pant leg.

Yesterday morning, a morning that pretended to be like any other, he swung his foot up to hook the oncoming sock... and I saw it. I caught his foot in one hand and left the sock dangling in the other as I gawked at it. It was a man foot. There were strong tendons fanning out with little dips between them. The toes were individually shaped with the first and middle ones grown longer than the big one. There were indents in the sides of them where they lay tightly against each other when he walks or runs. And there was a faint hint of stinky.

Before I could stop it, out flew an astonished, “Oh my goodness your toes!” Peanut butter and honey toast froze midway to his mouth and he looked down at me with concern. I recovered quickly and made up a little myth about how having your first and middle toes be longer than your big toe meant you are brilliant. I showed him the evidence of his genius and then tugged the sock over it and moved along to the other foot.

It too showed no trace of my baby boy’s scrumptious feet. No longer was it plumped up and covered in silky soft skin, topped off with perfect piggies... one the size of a small grape, the others like tiny treats in a row from biggest to smallest.

Those infant boy feet that I had sung to, feigned eating, massaged with lotion, and squashed against my nose to sniff up the sweetness of babyhood were gone, replaced by man feet. I had made it just fine through his first crew cut, his first day of kindergarten, and the loss of his first tooth but this... this was different.

I knew the second I saw that man foot it was a harbinger. It gave me a vision of something I was not ready to see. One day those man feet will walk out my front door and the boy will not return.

Bless Me Father, For I Have Sinned

2010-02-26T13:35:00.008-05:00

Bob Marshall, a Virginia delegate (R-13th District), had this to say about the reason women have disabled children...

“The number of children who are born subsequent to a first abortion who have handicaps has increased dramatically. Why? Because when you abort the first-born of any, Nature takes its vengeance on the subsequent children. In the Old Testament, the first-born of every being, animal and man, was dedicated to the Lord. There's a special punishment Christians would suggest, and with the knowledge they have from faith has been verified by a study by the Virginia Commonwealth University.”

Huh, I am not even sure where to begin with all that is wrong there, so I’ll change the subject.

I got baptized in the Spring of 2008. As part of the process at my church you have to meet with someone and talk about your understanding of baptism. I was asked what I expected would be the result of my baptism.

Considering that God had made it very clear to me that he wanted to me to get baptized (why else would I stand in a water tank, chest-level deep, in front of a couple hundred people and profess my commitment to him), I was convinced that there would be a dramatic change in my life. I expected to come up out of the water a new person, connected to God in a new way.

Just a couple weeks after my baptism, I found out that the baby inside me had a major heart defect and would require life-saving surgery by 6 months old. Oh, yeah, and it likely had Down syndrome too. Not exactly the baptism blessing one might expect to receive.

In fact, a girl might start to wonder if God was punishing her for something. Because after all, aren’t disabled children a burden? Don’t they suffer and cause those around them to suffer? Isn’t the scorn and hate people heap on them because they are inherently wrong, a mistake of nature, perhaps even Nature’s vengeance?

I am so glad God prepared me through baptism for the birth of Kimani. He knew that soon I would walk through the Valley of the Shadow of Death. He knew all the things I might think, all the fears I would have. He knew the barrage of contempt and ridicule complete strangers would hurl at me.

And he also knew that when it was all said and done, I would know I had been honored. I have given birth to a child that has given birth to me. There is no greater gift I could ask for. Kimani has cemented my faith in God and she has woken up my creative heart.

Thank you God, for in spite of my many sins, you have richly blessed me.

(Oh, and Mr. Marshall, shame on you for saying such an ugly, hurtful lie.)

Yes, Kimani, I am

2010-02-23T17:12:00.003-05:00

Learning When to Laugh

2010-02-20T16:15:00.006-05:00

I love stand-up comedy. I can't tell you how many times Eddie Murphy has cracked me up... “You don't got no ice cream.” I grew up with no ice cream and I could still laugh at that skit. And Damon Wayans describing his cheese-eating math teacher... ROTF LMBO.

I could have been a comedian. And I might have if only I hadn’t been so slim. (Oh, come on, you know there is a weight requirement when it comes to being a successful girl stand-up comedian.)

I love to laugh. And I am my favorite target. I make jokes about things that were hilariously embarrassing, scary, or painful only a few years (weeks, hours) ago. I make jokes about my marriage, my sex life, my weaknesses, my crazy childhood, my colorful pre-Jesus years...

Because laughter is therapy... it feels good. Laughter heals.

But not when it’s ugly... like the time I was in the back seat of a car with a friend-of-a-friend driving... and it was raining and there was an obese girl walking down the sidewalk. The driver deliberately drove faster into a large puddle alongside her and splashed her with the muddy water. The guys up front laughed like hyenas. I was horrified. Ha ha ha, not funny.

I pink slip people who make fun of others in a cruel or demeaning kind of way. I consider it a fatal character flaw, and with all the people I can choose to spend time with why would I pick someone who gets a belly laugh out of humiliating someone else?

Yeah, I knew when to laugh and when not to. Then Kimani was born and the line shifted.

Damon Wayans doing “Handi-Man” isn’t quite so funny anymore. And yet, one night when my husband and I were talking about Kimani having Down syndrome I said to him with a grin, “Last one out’s a rotten egg.” And then I burst out laughing (and ended up crying. It was all a little raw still.)

If you made that joke I’d wipe the mud off me and hand you your walking papers. Is that fair? She’s my kid, she’s my egg... it was my guilt. So yeah, it’s ok that I could make that joke. (And it's ok if you laughed at it, or gasped and said, "That's horrible.")

I hope Kimani inherited my sense of humor. I hope she learns when to laugh. I hope when she hears a joke about squeezing her pet rabbit to death... that she gets it, and that she cracks up over it.

(And, I am already proud to know that she will never get her laughs by hurting someone else.)

Stone Me

2010-02-16T14:55:00.005-05:00

A while ago I went with my aunt to see The Stoning of Soraya M. It was a hard movie to watch.

Soraya’s husband no longer wants to be married to her so he arranges for her to be accused and found guilty of adultery. According to Sharia law, she must be stoned for this. Her own father and her two young sons participate in the stoning (along with her husband and most every other male in the town).

I wanted to close my eyes, to turn away as the rocks flew into her face. But I denied myself that out because I knew it was a true story, and because she could not turn away, I would honor her by watching what she went through.

I felt so connected to her. I live in the same time period as she did. I have a husband and two young sons. I have committed sins much more worthy of a stoning.

I, too, have been condemned to die for my sins.

But as I await the fulfillment of my sentence, I hear Christ’s words, “If any one of you is without sin, let him be the first to throw a stone at her.” John 8:7

Though no one steps forward, the weight of my own sins still holds me down in that hole like the convicted prisoner that I am. I realize that I am alive today simply because I was born in the USA instead of Iran.

Picture credit: I doctored the dvd box art. You can click it to see the original.
'TUC in the Ground' by Artist Anaa.

100 Reasons Why

2010-02-13T14:05:00.009-05:00

When you first fall in love, it seems so easy to list the reasons why. It took me maybe a half hour to come up with a hundred of them, printed out on textured grey paper, rolled into a scroll, tied off with red ribbon.

A decade, four kids, and many trials later, it gets a little tougher.

Oh, I know I love him... I just can’t always remember why as I move through this endless pile of laundry and glance at that sink full of dishes. And I am vaguely distracted by a distant memory of life before him, when freedom meant being able to wake up a world away with no return ticket.

So I sat there staring at a blank screen wondering if it was at all possible to conjure up a new list without peeking at the old list.

I love you because...
Panic sets in. Do I even really love you still?

My fingers type... 1. Those beautiful blue eyes. 2. You never complain. 3. You root for my Giants. ♥

Before I know it, I am on number 15. You can find anything I lost. Then zing... 23. You let me sleep late... often. 39. You make a lot of sacrifices to get things for me. And 48. Any roller coaster, anywhere.

63. You’ll eat almost anything.
64. You take the dirty jobs.
66. “Honey can you get me a...” Always a yes.
67. That little dance you do.
70. You are kind to living things.

Oh, I am on a roll now. Elizabeth Barrett Browning ain’t got nothing on me.

74. You are generous.
75. You drove through the heart of Chicago during rush hour without getting us killed.
79. You like to make up and don’t stay mad for long.
88. You always remember my birthday and our anniversaries and every other special day. ♥

Huh, this isn’t nearly as hard as I thought it would be. Did I really think I hated you just yesterday?

93. You agreed to more children.
95. You let me warm up my cold parts on you.
96. You forgive my imperfections.

And finally, 100. For thirteen years you have loved me completely and unconditionally and I hope you will continue to do so forever more. ♥

Done. Another list tied with another red ribbon. Happy Valentine’s Day love.

(Oh, my dear blog reader, you want the unabridged version? Look me up on EBay... I’ll sell you a copy, cheap ;-)

STFU Sarah

2010-02-10T20:02:00.004-05:00

I’ve been a little too busy for the past couple of years to form a solid opinion of Sarah Palin. My mom loves her, my auntie despises her... It really has a way of ruining an afternoon tea at my house.

She just hadn’t ever done anything right enough or wrong enough to sway me either way. But that has all changed now.

You see when some apathetic big shot throws around the big R insult, Sarah’s opinion on it gets heard. Me, I write my heart out, leaving my blood and guts on the page and maybe a couple hundred or so people see it... a good 90% of whom are in the choir I am preaching to. But what Sarah writes on her FB account gets national coverage.

This woman is in a position to change things. She is in a position to stand up for Trig and for Kimani, and for all the intellectually disabled. Wow, what I wouldn’t give to be in control of her Twitter account for five minutes.

And so what does she do? She kisses Rush Limbaugh’s buttocks at the expense of her own child’s dignity. “Oh what Rush said? That was just satire, ha ha, and when you reference my retarded child using satire, well that’s ok.”

Here’s some real satire for you Sarah. Hope it breaks your heart like it did mine.

It Wasn’t Meant That Way

2010-02-05T10:46:00.017-05:00

(If you landed here after an image search, this post is better for you.)

It's time for a little etymology lesson. There seems to be great confusion about the proper usage of the word retard.

Even Chief of Staff Rahm Emanuel is a bit discombobulated. After all, he was only trying to vent his anger and frustration at an idea presented by a group of liberal Democrats at a weekly strategy session last August, when you know, it just popped out, “Fucking retarded.”

Once his slur came to light and was publicized as a big faux-pas, Emanuel apologized. He meant no harm to the mentally disabled. He wasn’t referring to them. He meant “retarded” in a different context... And guess what? Many bloggers are defending his use of the insult.

They say... What is with all this politically correct stuff anyway? Why are you so sensitive? Nobody calls mentally retarded people retarded... It just doesn’t mean that anymore. Everybody knows that the modern definition of it is: stupid, nonsensical, ineffective, useless, uncooperative. Golly, its the perfect catch-all for most anything that is annoying.

The word has Latin roots and by the 1400s it meant, “to make slower in movement or time,” and forms of the word came to mean to make something or someone late... think “tardy” or the French, “Je suis en retard” which translates into “I am late” (as in for a very important date.) The English version of the word is still used in this innocuous form today... a fire retardant mattress, a chemical that retards weed growth.

So how did the word travel from fire retardant pajamas to a playground insult? What is the bridge between “late or hindered” and “stupid or aggravating”?

Hmm, let me think, let me think... what is the reference of our shared understanding of the slur?

Is it...

No, no, that's not it.

Is it...

No, though that may be our shared reference for “ewww”.

Is it...

Nope, wrong again.

How about...

Ah, yes there it is. A mentally retarded person. A person who is mentally late, mentally hindered. She, and all those like her, are the reference we share in order to comprehend the meaning of Emanuel's insult, “Fucking retarded.”

There is no “other context” for the put-down. Whenever you say “that’s retarded” or “Stop being retarded” you are referencing my youngest child. You are saying that something is stupid, like my daughter. That it is useless, like my daughter, worthless like my daughter.

The medical community (uh, unlike general society) has figured out the connection between the insult and the basis for our understanding of the insult, and they have moved to change the terminology used to describe people like my child. She is now intellectually disabled.

Do you know why they changed the terminology? Because mentally retarded people are not a synonym for stupid, or ineffective, or useless, or uncooperative, or worthless. So do them a favor and delete the slur “retard” from your vocabulary.

If you are not willing to do that, then maybe it is time to admit that something in your upbringing has retarded your sense of decency.

My Three Little Words

2010-02-04T11:27:00.003-05:00

Back in my Triassic period, one of the fastest ways to get a pink slip from me was to pop out with three little words... “I love you.” Yup, premature enunciations of love would get a guy’s boyfriend status revoked. I had two golden rules... don’t tell me you love me and don’t ask me to marry you.

I love you, I love you, I love you... I’d heard it uttered in the dark by a frightened mother. I’d read it in ink-stained poetry. I’d heard those words professed by lovers, drunken men, and snakes... at times, all one and the same. I'd heard it threatened through clenched teeth and seen it hanging from a noose. I’d heard it in English, French, Italian, and even Albanian.

I’d heard it enough to know that it did not mean what it was supposed to mean. And therefore, those words did not trigger in me requited sentiments, no, no, instead they brought cold anger and contempt.

For I had already learned that love is a verb, not a capricious noun made up of pheromones, hormones, and other such sweet aphrodisiacs. So the rule was don’t tell me, show me. Because if I can’t tell by your actions that you love me, then let’s just stick with like.

My husband was a quick study and he took my warning seriously. He soon figured out that to get into my heart he needed to demonstrate my three little words... blood, sweat, and tears.

After all, those actions of love were given for me by a King and I would expect no less from a husband. He gave willingly all that was needed, and eventually I proposed to him.

These words were read at our wedding, “Set me as a seal upon thine heart, as a seal upon thine arm: for love is strong as death;” Sgs 8:6. And while we sport no visible branding, no colorful appellation tattoos, no vials of blood worn ‘round the neck... they are there in spirit.

Now when I hear the words “I love you”, I am at peace because he has earned the right to say them.

Picture credit: Armor for Man and Horse: The Metropolitan Museum of Art

There’s a Monster In the Pantry

2010-02-03T12:57:00.004-05:00

One day I opened the kitchen pantry door and found a Lego troll, armed and dangerous, guarding the peanut butter.

I picked him up by his ugly green head and tossed him back in the toybox. Then I heard him yell out, “I’m not the only monster in your closet!”

Are You Really Prolife, Really?

2010-01-26T10:58:00.009-05:00

I think most Christians would be quick to say that they are prolife, and to their credit for what that label is worth, they most likely are. But in our culture isn’t that label just a more positive way of saying anti-abortion, or perhaps pro-birth?

I am not writing today to argue the issue of choice. Nope, today I am thinking about what it means to be prolife. To me, being prolife means you “do things to give a person all the life to which he or she is entitled (C. Everette Koop)."

But the question is, who am I responsible to do this for? Certainly not just my own children... surely orphans are “entitled” to live as well... aren’t they? “Rescue those being led away to death; hold back those staggering toward slaughter.” Prov 24:11.

So here is my big question... why are so few Christian families adopting orphans? Is it just that they are blissfully unaware that there are languishing children out there desperate for a loving home? If so, news flash friends... there is a child waiting for you.

No, not a cute white American made newborn... other children await you. Children who are facing life in mental institutions... children with repairable medical issues who will eventually die if they are left untreated.

“Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12

These are real people, real children living in orphanages, real children just like Kimani... waiting, waiting. How can you look at them and then turn away? Their pictures haunt me. I dream of going to get them.

Here are two very good reasons why you might not want to go rescue them; You do not have enough money or space for a(nother) child and You couldn’t handle a (special needs) child. Did you know those are the two biggest abortion reasons? Not enough resources and can’t handle a child. You don’t accept those excuses from pregnant women...

I attend a large church. I am part of a large Christian circle. There are very few families who have adopted orphans. I see so many perfect families around me. Happily married, middle-class parents with two or three darling home-made children. They say they are prolife and when it comes to voting against abortion rights, they are.

But what about when it comes to Anna?

Addicted to Starbucks

2010-01-23T13:50:00.008-05:00

Somebody really loves vanilla lattes with whipped cream. Don’t panic, it’s a solo.

Oh no, I think she might be an addict just like her mother... because look what happened when we took it away.

Just to prove that I am not the worst parent in the world... I’ll let you watch her eat some nice healthy fruit for breakfast. For those not in the Ds community, this is a big deal... some kids don't like to eat. Kimani’s SLP is amazed by her abilities when it comes to food. Guess we got lucky in this category.

p.s. Dear grandparents, do not call me up and chastise me about the coffee. If you do, I will write a book about my childhood...

Sold Out

2010-01-18T14:29:00.006-05:00

Don’t you just hate it when you go to buy it, whatever it is that you really really wanted (like U2 tickets, or half-price Bobux leather baby shoes) and dang, there it is... the big SOLD OUT message. You can’t get one. Other people got theirs and you missed out.

Well, lately that is how I’ve been feeling about Kimani. She’s rare, she’s precious, and she’s beautiful. She’s practically a one-of-a-kind. She’s funny, and unique, and thought-provoking. She’s wild, and she’s mine. Mine all mine.

You may think you don’t want one but you’ve no idea what you’re missing out on. And if you did realize it, and did decide you wanted one, well na na... good luck. Unless you win the baby lottery you’d have to have about 750 kids before you get one like her.

Or you could head over to Reece’s Rainbow and snag one up before they’re all gone.

The Betrothal

2010-01-13T08:36:00.006-05:00

Before Kimani was born, I stressed about such things as whether she might go to college, or get married, or drive a car. My husband, who is the more relaxed of the two of us, was convinced she would do all those things. I let him rest in his denial...

Fast forward a year and a half. Did you know that lots of people with Down syndrome get married, mostly to each other? How fitting that such trusting and guileless people should find love in each other.

There are a lot of boys out there that could end up the lucky man... There’s Finnian, Sheridan, and Charlie just to name a few... but one little guy has already captured this potential MIL’s heart... and his name is Ozzie.

(Those who really know me well are singing... “Oh no, oh no, here we go now....”)

No, not that Ozzie... this Ozzie.

Oh wait... that was before she kissed him. Here he is in his princely form.

I met his dad out in blogland a while ago. We became friends and since then our families have had the good fortune to be able to meet up in NYC at the Museum of Natural History. It was Kimani and Ozzie’s first date ♥ ♥ ♥ Aren’t they cute together? Don’t you just love how they are checking each other out?

Ok, so she looks a little wary of the situation but we have plenty of time for him to grow on her.

A Cold Hard Place

2010-01-06T06:55:00.002-05:00

August 2008
One day my unborn child, who had already enchanted me, was handed down a sentence, unearned and unjustified, and it became my passport to the molten center of my life’s core. In the beginning the adrenaline fueled by my fear protected me. After that, I cried and I cried until I was empty and speechless, and then I slowly learned a new language... one that gave me hope of a way out, one that reminded me that there may not be one.

And now I wait. I watch my baby’s body war with itself. I feed off the brief glimpses of normalcy... a coo, a cry of hunger, a dirty diaper. I stare into eyes that do not know what I know, that do not fear what I fear. I wonder if the coin tossed high will land on my call, and if I will still be able to gaze into these eyes tomorrow. I am afraid to leave her, afraid to go home, afraid that she will die while I shower, or kiss a different child goodnight.

I pray, (and perhaps I bargain and make undeliverable promises). I walk alone into the temple with my paltry sacrifice, and I go one on one with God. I am terrified that He will ask for this child, and that I will not be able to answer.

Specialists, with stacks of medical degrees, confer at her bedside. They can not give me the answer. They can not write the end of this story for me. These chapters that hang between living and dying are fraught with needles and drugs, wires and tubes... the life support tools of the trade. Fancy machines monitor her score with numbers blinking red and ever changing. Alarm bells ring for more troops and battalions charge in to rescue her in these moments.

I am so tired in my head. I feel like we have been marching for days on end with no food or sleep. I feel as though I might drop her before we reach our destination, and that if I do, this will all be over, and her death will go on forever.

So I sit, awake in the cold hard space between life and death, watching her, waiting on her. I touch her soft warm skin, bruised and torn. I lean in close and sniff her baby scent. Heaven’s perfume still lingers on her. I swallow down everything that is outside of this breath of her. I push it into the tight ball that has taken over my stomach. I cannot let anything distract me from memorizing this instance of her... because I’ll need it someday, no matter how this story ends, I know I’ll need it.

(I read this post and it took me back in time to a place I’ll never forget. She does a much more eloquent job of explaining it, that cold hard place where a parent goes to wait for the answer.)

Where Were You?

2010-01-03T14:56:00.009-05:00

So you wanna be my friend on Facebook? I won’t say no... I am not interested in lobbing a mortar attack. But I will ask you, “Where were you when my baby lay dying in the hospital?”

The silence coming from your neck of the woods was so loud... it told me all I needed to know. For 113 days that tiny girl fought for her life 15 minutes away from you, and you never even went to meet her. Had she died there, what would you possibly have had to say to me at her funeral?

Oh, you don’t like hospitals? You can’t handle seeing little babies who are covered in wires? You could have brought a meal over, or offered to spend some time with the children I left motherless at home.

You judged her, and you judged me for letting her be born alive. And your silence was the sentence you imposed on us.

And now we’re friends on FB. Facebook needs new categories, "Friends but not really", "I think I remember you", "Not friends at all but I want my number to go up".

photo by Artist Anaa

The Year-End Big Brag

2009-12-28T17:15:00.005-05:00

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

2009-12-20T23:19:00.006-05:00

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...

2009-12-18T09:18:00.003-05:00

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

2009-12-16T21:34:00.004-05:00

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

2009-12-15T21:39:00.006-05:00

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

2009-11-21T23:17:00.002-05:00

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

2009-11-12T09:24:00.002-05:00

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?

2009-11-06T10:35:00.004-05:00

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

2009-11-05T09:47:00.001-05:00

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

2009-11-04T11:11:00.005-05:00

(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

2009-10-21T21:43:00.003-04:00

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

2009-10-19T10:42:00.002-04:00

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

2009-10-14T20:09:00.003-04:00

Pizza Hut Post Notes

2009-10-12T15:47:00.005-04:00

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

2009-10-09T11:11:00.001-04:00

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

2009-10-07T13:00:00.007-04:00

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

2009-10-06T10:58:00.009-04:00

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

2009-10-02T08:27:00.003-04:00

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

2009-10-01T10:56:00.002-04:00

Dreaming

2009-09-30T13:34:00.002-04:00

Can you guess what he's dreaming about?

The Blessing of Tragedy

2009-09-15T09:31:00.007-04:00

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

2009-09-13T23:20:00.004-04:00

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.