No Halos Here

I read an article by David Perry the other day that challenged the idea that it is ok to label people with Down syndrome as angels. It happens a lot. I am guessing it is because people are trying to be nice and don’t really know what to say that will come across appropriately positive, so they play it safe with, “Children with Down syndrome are a special blessing from God. They are like angels here on earth.”

Perry’s response to that was,

“But while good intentions count for a lot, “angel” makes me no happier than “retard.” ... Symbols, labels and representations—in media, literature and our daily conversations—shape reality. The words “retard” and “angel” represent images that dehumanize and disempower. Both words connote two-dimensional, simple or limited people. Neither angels nor retards can live in the world with the rest of us, except as pets, charity cases or abstract sources of inspiration.”

The discomfort I feel when people refer to my child as something otherworldly was validated when I read it. Kimani is not an angel. She is just a girl... a girl with an extra chromosome who suffered brain damage as an infant. Physiologically she has too much, and too little. I admit that there may have been a time early on that I hoped she was an angel. The path she has been relegated to would be less painful (for me) if I knew that she was in fact a higher being submitting to some Godly purpose here on Earth. But, alas, she’s just a girl.

If she were an angel, she would not have gotten herself kicked out of the church nursery 7 minutes after I dropped her off there for the very first time. Yep, we have not gone to church as a family in a long long time but last Sunday we decided to try a church we have been wanting to visit. Kimani terrorized the nursery workers and children. In a flash she swiped everything off the little table and tried to climb up on it. She took snacks right out of the hands of her peers. She stomped back and forth the length of the room, thrashing and trashing in her usual Godzilla style. The poor shell-shocked nursery worker handed her to me over the gate and said, “I’m sorry, she needs a one-on-one.”

A very cool feature of this church is that the later of their two services is in a big room that has a children’s play area in the back. I took her over to the toys and let her play on one of the little tables while I listened to the message. My husband slipped out of his seat and joined us. This lasted about 5 nerve-wracking minutes until she spit up some milk. I left to get a paper towel to wipe her chin with, and she escaped her father climbing down from the table and up onto another one... that had a bucket filled with Legos on it. In a split-second she threw the bucket and all those tiny Legos made the loudest noise ever. That was it... the non-angel went to sit in the van with her daddy.

There is still a chance though that she has a Guardian Angel who watches out for her. Take a look at this clip of our daily life, and you decide.

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.)

The Wrong Impression

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.