Kimani Lost a Tooth and I Lost my Baby

On January 4th Kimani lost her first baby tooth. It happened right before dinner. My husband was bringing her to her highchair when he mentioned that she had a tooth that was sticking up in an odd way, like maybe it was loose. I told him to hold her so I could have a look in there and just as I opened her mouth, a bottom front tooth fell out onto her lip. It is smaller and daintier than any of my other children’s, so reflective of her.

I wasn’t ready for this, not just because her teeth came in late and therefore in my mind would fall out late, but because she is still my baby. To me she is frozen in time, forever about 24 months old.

I know, Autumn is really the baby of the family... but she’s not. Autumn can talk, and count, and read Moo Baa La La La with me, and she can handle an iPad like nobody’s business. Autumn might still look like a baby, but she is actually an ordinary toddler with a rather deceptive baby face.

Kimani isn’t a baby anymore either, which this damn tooth on my desk proves.



So what now? It is hard to watch her body grow while the rest of her stays behind. It is hard to watch other children with her same extra chromosome move along intellectually while she still struggles with the basics of feeding herself with a fork.

She is this beautiful little girl with a whole lot on the inside that can’t make its way to the outside. And yet sometimes it seems as though there is nothing at all going on in there. It was easier when she was a baby because so much less was expected of her. Babies eat and poop and look cute, and she mastered that. Now, I feel like almost everyone who meets her and tries to interact with her ends up looking to me for answers, explanations, and excuses. I am the voice she doesn’t have.

When I plucked that tiny tooth off her lip, it struck me that she is growing up, without toothfairies or ABCs. Denial and I wanted to stuff that little thing back in her mouth but we couldn’t because in its spot was already the nub of an adult replacement.

Dumped from Hippotherapy

Two letters came in the mail, one for Masha and one for Kimani. Masha’s letter welcomed her back to the spring session of hippotherapy and invited us to set up her riding day/time...

The other letter informed us that "it has been determined that your child could benefit from a break at this time due to safety issues. You may reenroll at a later date if it is determined that Kimani is able to demonstrate safety necessary to be in the arena and on the horses."



I am crushed. This is a program designed for kids with special needs. Aside from pool therapy which ended with pre-K, this is the only therapy that Kimani has shown interest in and even clearly enjoyed. And she benefited greatly from it. We saw her begin to use her right hand, as well as begin talking again. She would get so excited when horse day arrived. She’d bring me her horseback-riding PECs card and her shoes. She would vocalize all the way to the barn and back.

I am angry. How dare they dump her because she requires more support, more effort on their part. This is not about safety but rather about her being a lot of work. She never did anything wrong toward the horses (other than try to eat their after-ride snacks). She never ran off in the arena. And though she sometimes leans to one side while on the horse, she never jumped off or threw herself off the horse. And how the heck are we supposed to “demonstrate safety necessary” if she has no horse to practice with?

Yes I am going to try to change their minds. Yes I am going to try to find another program. But damn, I am tired of fighting the “normal” system and now I have to fight for her in the “special needs” system too? And the reality is that she probably will not be able to get back into this program or any other hippotherapy program any time soon.

The Family Portrait

I am a scrapbooker. It’s an addiction. But, no matter how much I do it (and have done it for over ten years) I am never caught up. The other day I was working on layouts from a family cruise that we went on back in 2001.

My dad took us. He took us all—his mother, his aunt, all his children, all his grandchildren—on an 11 night cruise to the deep Caribbean. One of his brothers also came with his wife and children. At the time, my husband and I only had one child, his daughter TK. She was about 8. It was a wonderful vacation filled with visits to beaches, and ruins, and jungles, with giant blue butterflies and slippery stingrays.

One of the things I love best about cruises is formal dinners every night. I love dressing up. Look at us, lol, we look like the Addams family.



There is another photograph, a family portrait taken of the whole group of us together. It was that particular picture I was scrapping when a thick sadness overwhelmed me. I wanted to print all the names vertically on vellum paper to stick next to the photo. As I was staring at the faces, typing the names, it struck me how broken and gone my family is.

The greats and grands in the photo have since died. I adored my grandmother, and I still miss her. But, old ladies dying in their nineties is not the sad part. Divorce is the sad part. There are people missing that I loved. They were my family and they are no more. And because the wife is gone, so are her children. I showed the picture to my sons and neither of them could name half the people in it.

If that picture had been taken ten years earlier, there would have been a different step-mother for me and a bunch of other step-siblings. Going back even further, there would have been still another step-mother, another aunt, and different cousins... Divorce has divided me from my family since I was a year old and my parents divorced. My paternal grandparents are divorced. Every one in my parents’ generation (both sides) is divorced, some more than once. My generation on my side and on my husband’s has not gone untouched by the disease. I wonder what the family picture looks like ten years from now. Will my children still have all their aunts, uncles, and cousins? I doubt it, and my heart breaks just thinking about it.

We scrappers joke around that if you piss us off we will crop you out of our layouts. Ha, in this family, we divorce you out of our layouts.

I hate divorce. I hate how it breaks apart families, unit by unit, until there is nothing left but scraps in a photo album.

Tomorrow I will have a lovely dinner with my family of seven, and one set of grandparents. Our kids have three sets total, and that is not going to change for them. They will never have to learn to love a new grandparent or to forget a discarded one. Only the natural circle of life will separate them from their grands. For that, I am thankful.

I admit though, I am jealous of you who have generations of intact families. You are out there right? You do exist?

Daddy Heard Your Song Today

I watched daddy’s black car swing into the driveway, music blaring. It was your song playing on the radio. He waited it out, and though I couldn’t see through the tinted glass, I knew he was crying. He was crying over you Kimani.

How does one broken heart console another? Of all the things I have learned in the last five years, that one remains elusive. Instead I catch his sorrow and we cry together, standing outside in the rain, with the autumn wind flinging wet leaves against us.

If only we knew then in the hospital what we know now. If only we had pushed harder. If only we had insisted. If only we had not believed the nurse who said you were fine, when really you were seizing from the bacterial meningitis that was terrorizing your brain. If the antibiotics that came late that night had been administered 11 hours earlier, would you be a different little girl?

And what if I had stomped my foot down and never given in to letting you get that CV line in your groin? Would the hospital have really called Child Protective Services on me like they threatened to? Would one less brain insult have made a difference for you? Will I ever stop hating that doctor who pressured me into giving her permission to do it to you?

It was all life or death, honey. Every decision we made concerning you led to this life or no life for you.

If you could have seen your future, would you have consented to have your aorta resectioned? Did you visit with God while you were dead? Did he convince you that this life would be ok once they restarted the blood flow to your brain... bringing you back to life? Did he give you a choice in the matter?

I hope so Kimani. I would like to believe that you chose to stay with us, despite the life you would have here. Because that... that kind of feels like forgiveness, which is maybe what your parents need the most from you.

Not Jealous of You

This morning, while all five children—home from school on winter break—frolicked around and I tried to clear off a spot on the far side of my kitchen counter where I might fold laundry, Kimani jumped from the kitchen table to the counter and, in a split second, threw my bread machine onto the floor... smashing it.

I was so mad. I chastised her and promptly plopped her in her crib for a time out. And then I proceeded to attempt self-pity and tried to think of someone I could be jealous of... someone whose child does not daily earn the title of "The Master of Disaster."

No more fresh bread, damn it.

And the very first thing that popped into my mind was Kevin Carter’s Pulitzer prize-winning photo...



No, I cannot be jealous of that child’s mother.

But that didn’t stop me from wanting to feel like shit so I put the starving children of this world out of my mind and tried again. And images from Kimani’s school came crashing down on me... beautiful little girls just like her who cannot climb on tables and counters, who cannot walk into their mother’s arms...



"Ok," I said to myself, "it was just a bread machine" (this time). Despite the first tingles of guilt, I still whined to myself, "but couldn’t it be easier?"

Surely she could be like... surely I could be jealous of... think think think

I can’t show you pictures of what I saw then... a procession of little faces, Kimani's friends—some forever infants, some toddlers, some four year olds like her—all of whom break bread in Heaven now... each one I remember so clearly, and their mamas... each one so undeserving of the loss they suffered.

What the hell is a broken bread machine compared to that?

Minus the Sugarcoating

Every now and again I keep Kimani up late and I snuggle and play with her in the livingroom, and it is wonderful. For the most part she is calm and open to my affections, and she plays, she actually plays with me... in her own divergent sort of way.



Tonight I let her stay up because during her bedtime routine she kept saying "No bed" to her father, and when she manages to speak, she always gets what she wants, provided we are able to give it to her.

Jade was also up and playing with some new Melissa & Doug stacking toys—trucks and trains—in the livingroom. He wanted me to play with him too. So she and I did. Vroom, vroom, I loaded wooden cars onto a wooden trailer while he built a bulldozer. Kimani tore it apart and put some of the pieces in her mouth.

Jade got frustrated and very upset with her. He let out a short angry cry and then accused her to me, "Sometimes I think she is stupid!" I could see it in his face, in his eyes, that he was afraid of what he had said. Maybe he feared getting in trouble, or maybe he worried that he hurt her feelings... either way the words just hung there in the room, and the tears welled up in my eyes.

I didn’t know what to say to him. I hate parenting moments like that... when there is something big, something important, perhaps crucial and I have no idea what to do with it.

Even though I didn’t know what to say, words came out, "Yes, Jade. She is stupid. She cannot think like you can. Her brain was hurt when she was a baby and it made her stupid. But we don’t say it like that because that is mean. It is not her fault. She cannot help it. Can you forgive her for ruining your things?"

He said he could.

(Can the mother forgive Fate for ruining her child? She said she cannot.)

Grateful for a Plateful

I admit that I often find it hard to be thankful when it comes to Kimani. Whenever I try, I find myself comparing her situation to what might have been worse. As in, I am thankful she didn’t die like so many of her NICU/PICU warrior friends did. I am thankful she can walk and climb because I know some babies that suffer brain damage can’t. I am thankful she can hear, and for the most part see, because meningitis tends to destroy those senses.

It makes me wonder about the feeling of gratefulness, and how it comes about. It almost seems to me that I have some imaginary baseline for everything in life, and if something rises above it, I am easily thankful. But Kimani is far from any mark I may have etched in my subconscious and finding things to be thankful for feels more like relief than a bona fide moment of gratitude.

Without this genuine gratefulness, am I living a life of poverty regarding her? I keep searching for something in her that belongs to her from before, a piece of who she was supposed to be, and I can’t find it. I swear I have gotten a glimpse of it but I cannot hold it long enough to decide if it is in fact her... the real her, or if it is just wishful extrapolation.

“It is what it is. She is who she is,” You say. And I say that too most of the time. But I promise you that it really isn’t that simple. There is a loss so ever-present in her that you cannot just accept it and be peaceful. It is a loss that cries out daily for recognition. It is a loss so powerful that it wills you into its tribulation, and you are unable to walk away without a secret wish that it would give her back.

I started thinking about this whole thankful business last month when my Facebook feed was flooded with statuses of what my friends are thankful for. I wanted to be thankful too and I was mad at myself that I could not come up with anything to post about. Then, just before Thanksgiving, a little craft project came home in Kimani’s backpack. It was a paper plate with pictures of food glued to it and it said, “Kimani’s Thanksgiving Plate.” I wondered if Kimani chose the foods or if the teacher did. I wrote a note asking about it and her teacher said that she chose the items from magazine cut outs that were placed in front of her. Kimani loves all the foods she put on her plate... pretzels, strawberries, pasta, peanut butter and jelly sandwiches, and pizza.



Just looking at that plate covered with two of everything she loves knowing that she chose those foods herself made me so happy, so very very happy that I finally felt it... gratitude. Truly, like Pooh Bear, I was grateful for a plateful.

Raising Cain

I remember... when TK was just eleven years old she came home from Easter vacation at her mom’s house with her long beautiful hair dyed black. Black as black can be, and I thought to myself, “Oh no, here we go.” And though my husband cut off all her hair, what drove her did not go away. From there on out, it was a rough ride... not because she began misbehaving but because she was struggling internally: sad, angry, and no positive self image.

I thought it would be so much easier with boys, but now I see that I was wrong. Just the other day when I was searching You Tube for a song, my oldest son—nine year old Gecko, poked his head in my office and said, “Can you play ‘Feel Like a Monster’?” I had heard that song before, probably on the van radio but I couldn’t think of how he would know it. He went on to tell me that it is his song, that he feels that way.

I pulled it up and clicked the Play arrow... and after a couple seconds of an animated icky video, I stopped it. “How did you find that song?” I asked him, concerned about him searching You Tube for anything at all... and he explained that I had the wrong video... there is a video of the Pokemon Zoroark with the song. Hmmm, Pokemon... ok but not really because I do not like the idea that he identifies so strongly with the words to the song.

Now he sings it everyday. Just this morning waiting for the bus, "♪ ♫ I've lost my soul, ♪ ♫ I've lost my heart." Listen if you dare.



I wish, no stronger than that, I ache to be able to go back to when he was just a little toddler and do it over again so that somehow we don’t end up here. (Did my mom think she did it all wrong when I would blare AC/DC’s ‘Highway to Hell’ on my stereo everyday?) Isn’t nine a tad young for this kind of angst?

The boy sure is his mother’s son.

Heartbreak #4829

The school psychologist has a voice like a child. She sounds much too young to be telling me that the classroom teacher has asked her to do an assessment of Kimani’s mouthing behaviors so that a formal plan of action can be created to discourage such things as eating the wood chips on the playground.

It never ends... the things that don’t happen for her as they are supposed to. These things, they jump out like a springing puppet in an old-fashioned jack-in-the-box. The twisted metal handle with the wooden knob is always turning, the song of simple notes is always playing... always, always, always... and then BOING! Heartbreak #4829. (But really, who's counting?)



She is not delayed. She is detoured. She will not be coming back around this way. She tromps on delicate feet into uncharted territory. Her tiny fists are balled up. If you were to pry them open, you would find the hearts of her parents, crushed, one in each hand.

Our Only Begotten Daughter

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

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

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

I couldn’t.

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

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

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

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

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

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

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

A Question of Faith

A while back I wrote about how I had an epiphany that there is no God. At the end of the post, in the comments, I was asked if my faith is conditional.

I suppose if I once had it and then I lost it, and then maybe I started to rebuild it... maybe it is conditional. But it wasn’t really faith I was talking about. It was belief. For a while there, my belief in God was suspended.

I realized of course that like Job, I still believe, but my relationship with God is crippled. Partly because I am a crappy Christian, partly because you are crappy Christians, but mainly because my daughter has brain damage.

Can I tell you how many Christians have said to me with a big Christian smile, “God made Kimani “special” and chose you to be her mom”? Had it just been Down syndrome, I might have able to buy into that platitude. Lucky me, lucky Kimani, we are so privileged and special.

And in some ways, it would be true (even though you speaker of platitudes didn’t really know it from experience or believe it with conviction) because Ds is really normal everyday life in slower motion and without the normal capacity for evil behavior.

God made Kimani have brain damage. Are you going to say that too? God let Kimani have brain damage. God did not protect Kimani from brain damage. Maybe July 27, 2008 was a really busy day for Him and oops He overlooked her.



It is really hard to go around being Happy-go-Christian when you are furious with God. It is hard to listen to other Christians' platitudes, and to overlook their sinful actions when they are exclamation points in my dear john letter.

What is faith? If the question is actually one of belief, then yes I believe that God exists. But if the real question is do I have faith that God is all-loving and that everything He does is for our good? No, I don’t think I am confident in that concept any longer.

Eventually will the bigger picture prevail on me? It may.

"Fuk Off & Pray"

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

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.

There Is No God

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.)

What Can't I Do Online?

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.

Regret

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.

The Dead Mouse

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?

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 Open Door

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.

Rescue Me

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.