Respite

In the old days, respite was called Valium (and some days it still is) but now there are programs that actually send people to your house to give you a break so that you can cook dinner or maybe go to a dentist appointment. A few years ago we put Kimani on a list to receive respite services and then we pretty much forgot about it. Also about three years ago, I learned about a PCA (personal care assistant) program that provides you with someone to do task-based services with your child. I signed up for that too, hoping that one of these programs would come through for us.

Last July the PCA program administrators contacted me to set up a time to meet us. Kimani’s name had come up on the list. After interviewing me, and observing her, they determined that we could have three hours per evening. All we had to do was find an agency to manage the payroll and find our own PCA to do the work. Easier said than done, but I put the word out to a local college that has a special education teaching program and crossed my fingers that some student would be interested in this part time job.

Then about two months later, I got the news that Kimani qualified for an unheard of 20 hours of weekly respite and I did a hallelujah dance all around the kitchen. When the boogie ended, I wondered if she could actually have both services since they are both covered by her Medicaid waiver. After a quick call to the county, I found out that the answer was yes, as long as there was no overlap. The program coordinator brought the respite worker, Lexi, to our house to do the orientation, and the following Monday she started.

All in all, she maybe showed up four times over the next few weeks. She was consistently late and constantly a no-call, no-show. But she did show up just enough times to steal our iPad and a $50 check my son got for his 7th birthday. The program coordinator was apologetic and Lexi got fired, and we were once again without respite (and down an iPad which has caused havoc between our girls). But a couple weeks later they sent a new girl. She was pretty consistent and actually changed diapers and cooked lunch. In time I felt good enough about her to make appointments for myself. Unfortunately, it always seemed that the day I had something planned was a day she also had something come up and couldn’t come in. I realized that respite is great, but it is completely unreliable and planning on it is a fool’s game.

In November, the college resource paid off and we got the phone number of a student who was interested in the PCA position. After a couple weeks of paperwork and fingerprinting, she started work. Immediately all my girls fell in love with her. She has a younger brother with Down syndrome, and she knows exactly how to interact with the girls—high expectations, clear discipline, and an approach that sees nothing odd about them. Her name is Eva, and I hear it now all day long... Eva Eva Eva Eva... they love Eva. Eva’s job is harder than straight up respite. She has to prep Kimani for dinner, provide one-on-one support while she eats, potty her, bathe her, put cream on her, brush out her hair, brush her teeth, get her ready for bed... it is a lot especially with a little peanut who won’t cooperate most of the time. Eva does it all with a sweet gentleness that must be a personality gift.

In the beginning of January our respite worker mentioned that she was picking up another job, and that she would have to limit her hours with us. She dropped to once a week for two weeks and then was done. We immediately started the process of getting Eva a second job with the agency that provides the respite service but these things take time. So for now, we are once again without respite. Hopefully in a couple weeks Eva will be all set up and can work as many of the 41 combined hours as she wants.

I can’t even adequately explain how awesome it is to be able to cook dinner while my husband actually relaxes after his long workday, without worrying that Kimani is going to break something or get hurt. Having Eva lifts tons of stress. Of course since she is a college student, we are on borrowed time with her, but for now she is the best thing to happen for us in quite a while. I am already fantasizing that we could take her with us to Disney when we finally get enough points to go.

Has the Onion Gone Too Far?

I am not a fan of dark humor. This is mainly because, well yeah, it attempts to make jokes of things that most people find hurtful or offensive. Ridiculing illness, poverty, injustice, natural disasters, oppression, and the like, is just not my cup of tea.

So you can probably guess that I am not a regular reader of the Onion. To their credit, they do post some funny stuff that does achieve the goal of good satire by poking fun at politics and other scandalous matters. These articles usually make it to Facebook and I have been known to give them a click.

That is sort of, but not exactly, how I came upon the Onion’s 2013 Holiday Gift Guide. In this case, a furious friend and fellow advocate posted it to a FB group I am in because this time they hit too close to home. The gift list includes petrified dead babies from Pompeii, terminally ill dogs, prosthetic legs for dads who have lost theirs, and white babies that *might have Down syndrome.

While I was checking out the offensive post, I noticed that the cover page post was a tasteless piece reporting on how “thousands of Americans will notice the first signs of dementia in their parents this holiday season.” Hardy ha ha ha, that is so funny, not. After poking around the archives for a while, I found lots of similar not so funny posts.

In fact, if you do a search at the Onion on Down syndrome you come up with plenty of insulting and dehumanizing posts. Back in ‘08 they even referred to Sarah Palin’s son Trig as retarded. If you want to bitch about an Onion post, well folks start there.

The Onion’s 2013 Holiday Gift Guide is not funny, not even the parts that have nothing to do with Ds or dying dogs. But this isn’t THE post where they went too far. That happened long ago. To read that gift guide post, and only complain about the fact that Ds was mentioned feels wrong to me, like maybe you think the rest of it was perfectly fine. I doubt the children of wounded warriors whose dads are just getting used to their new legs or the people whose dogs really are dying right now agree with you.

My point here is that the Onion is in the business of being offensive. It is dark humor. And listing a white baby who might have Ds for sale is just one of the many offenses on that list and on that site. If you want to cry foul, then maybe you ought to scream it from the top of your lungs for more reasons than just Ds. And maybe you should stop reading the Onion and stop buying from their advertisers. Write an email to the Mormons and tell them that buying ad space there rubs you the wrong way.

I sent an email to the Onion’s CEO Steve Hannah letting him know that I thought the majority of the list was offensive. Then I let him know that people with Ds have it hard enough without “funny” publications like the Onion making their hill even higher. I also informed him that $1275 is a ridiculously dirt-cheap figure for a white baby with Down syndrome. We paid $27,000 for ours. I am sure my note ended up in the trash folder along with thousands of other emails complaining about thousands of other hurts.

If you feel like writing to the Onion to let them know that Ds is not something to make cruel jokes about, please do: publicfeedback@theonion.com.

And, if you have $1275 you want to spend (or even $5) on giving the gift of a baby with Down syndrome, please check out my friend Nykki’s donation site. She has had a certain little man with Ds on her Christmas list for quite some time now.

The Butt of the Joke

An online friend of mine posted a picture on her blog of her young daughter looking at the french fries she was about to eat. It was a cute picture. But someone came along and stole it. They put the title "cannibalism" on it and passed it around the Internet.

I felt sorry for my friend. I know how much it hurts. After all, I have three girls whose pictures betray their #1 disability... their low IQs. I know what it is like to worry that someone will take something that is precious to me and turn it into a retard joke.

What I don’t get, what I don’t understand is why the world allows it. There are moderators on every board where my friend’s daughter’s altered picture appeared. Those mods did not take it down when they saw it. The general public did not comment that the picture was hateful and unacceptable.

When will the disabled stop being the butt of the joke? Long gone are the days when someone could make a meme like that using a racial slur and have it remain posted anywhere for more than 30 seconds. Likewise, gay-bashing is well on its way out of style and it is doubtful you have to worry about a public space allowing your gay child to be strung up as the joke of the day. But the cognitively impaired are still fair game? Five year olds with Down syndrome are the final frontier of hurtful humor that we just can’t let go of? Why is that?

I know what you’re thinking. It is just a few mean creepy people doing stuff like this and who can stop mean creepy people? But it’s not. It is all of us, every one of us who says "retarded" as an insult. It is every one of us that uses its catch-all abbreviated cousin, "tard" for anything we don’t like. It is everyone of us that condones Ann Coulter and Bill Maher, and even Rachel Jeantel’s use of the r-word. It is every mod that doesn’t take down the insulting meme, and every one of us that turns away in silence after we see it.

We as a culture need to decide to stop insulting our disabled population. We need to refuse to accept them as the butt of the joke. We need to refuse to allow those on either side of the political aisle to get away with the r-bomb. We need to reach out to those around us and ask them not to say it, and to stick up for the disabled. Only then, only when you care as much as I do, will it end.

Only then will these beautiful faces be safe.

You Made Your Bed

A blogging mom I know who produced an abundance of children wrote a post the other day about how hard motherhood can be, in fact she said it feels like a thankless job. She was truly venting, showing an honest and vulnerable parenting moment, and for the most part she got a ton of comments from women, including me, who were all very much like, "Yeah, I hear you."

But she also got the comment about how she basically is doing motherhood wrong and if she could only learn to do it right, she would find that her now well-behaved children make her feel like motherhood is a "thankful" job, although really, that is not the opposite of thankless in this context, but hey... when you are preaching there is no need to check your semantics.

Anyway, this blogger really puts herself out there and over the years I have noticed that she gets a lot of "You made your bed now lie in it, and don’t bitch about it" crap. And I have been thinking about that because I made a bed too, and I would love to share the reality, the struggles of living with all my choices but I really don’t want to listen to all that self-righteous baloney from readers in glass houses.

Because all of us live in glass houses. I don’t care who you are or how much you Fakebook, there are truths in your life that are just as tough as the ones in mine, or Lisa’s. And furthermore, many people who "make their bed" give up and get out of it... for example, half of all marriages end in divorce.

Life is filled with choices that have both positive and negative consequences. So why is it only ok to talk about the positive ones?

There is a loss of integrity in our own lives when we are unwilling to let people talk about the difficulties that came with their choices, when we condemn and attempt to silence them with our judgements.

The Wicked Stepmother

I came across a blog written by a woman who is the stepmother of an 11 year old girl with Down syndrome. This mom is young, and pretty, and struggling with rage and resentment. Reading her posts ruined my day. I know lots of kids are ignored, unloved, screamed at, disdained, and all kinds of other descriptors that border on abused but when it is because the child has Down syndrome that hits close to home.

"I could see all these great attributes in her, attributes which she would receive compliments on almost regularly. For me, however, all I could see was the disease. Ugliness. Stupidity. Mental inabilities. Physically odd attributes. A disability. A down syndrome."

"Give her away!" I yelled at the screen, "Just give her away to a family that will love her."

What really irks me about the blog is that the whole thing is dripping in Christianity. As in this excerpt,

"Today I needed an extra dose of prayer. Perhaps I got it but ignored whatever God was trying to send my way. In fact, God knows what I need. He gives what I need every day. Yet failures threaten to take over - and oftentimes they do. This weekend (child’s name) became a full-blown nuisance. This weekend nobody really wanted her. This weekend she was tossed around from family member to family member. Tag! You're it!"

Or this gem which makes me wonder what her hands have done...

"Now, when I feel overrun with guilt over what my angry lips have said yelled or what my hands have done out of hatred, I can see that God is there beside me. He is with the ones I have hurt, too. He is their comforter and my redeemer."

WTF? I am a stepmom and an adoptive mom... I get it, it’s complicated bonding with a child who didn’t spring from your loins.

My stepdaughter looked very much like her beautiful mother and growing up she made the same facial expressions as her mother (the eye roll, the FU half smile, the evil glare) and so she was a constant reminder of another woman my husband had once loved. But as much as I abhored that woman, I never took it out on my stepdaughter. I grew to love that little girl and I wanted her to love me. Now she is an adult and I see both her mother and myself in her. Hopefully she retained the best of both of us.

 

My older adopted daughter was so alien to me. With a judge’s signature she became mine for all time... but she didn’t feel like mine. I was grossed out over her boogers, her poopcidents, sharing a straw with her... I admit that I often felt like the fulltime caregiver instead of an adoring mother. I knew that those little things that grossed me out were anachronisms still present due to her having Down syndrome. I knew that these were things beyond her control. Knowing it did not help fix my heart. I loved the idea of loving her, but I did not feel a motherly love for her. So slowly it grew that I worried there might be something seriously wrong with me. I have a best friend who fell for Masha hard, and all she ever saw was the beauty, the cuteness, the dearness of her. She would laugh at the booger kisses, share her food, and clean her up like none of that bothered her at all. Her love for my daughter was a different lens for me to see through. Her love for my daughter helped me to be the best mother I can be be to Masha.

I wonder what it would be like to combine those two scenarios and drop the cute baby phase out of it (that mom got her step kid past the toddler age). I can understand that mother’s feelings but I cannot relate to her refusal to try actually loving the kid as a possible solution to their fractured relationship. Love is not just a feeling... it is not something that happens to us or doesn’t... it is action. If I could give that mother one piece of advice I would say, "Fake it till you make it." Smile at your stepdaughter, hug her, paint her nails, forgive her her mistakes, let her play the way she wants to, praise her, protect her dignity, compliment her, be a model for her of what a Christian woman should be like. And one day you will find that you aren’t just acting in obedience to your God, but also out of a real love and enjoyment of this girl who will forever see you as what a mother is.

C'mon Ann

Liberals do it. Comedians do it. Actors do it. Conservatives do it. Seems like there is no end to the public figures who don’t realize it isn’t ok to make jokes or attack your foes by calling them “retarded”.

This time around it was political pundit Ann Coulter, who regularly appears on FOX news shows, that tweeted, "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election."



It was retweeted a little over 300 times... which really isn’t a lot on twitter for someone with close to 200,000 followers. Maybe that is because most people by now know better than to demean, marginalize, and crap on an entire group of people just to insult Obama voters.

Anyway, the tweet pissed me off... but the lack of reaction from Conservatives who give her a platform makes me furious. O’Reilly and Hannity are constantly complaining that the Left makes jokes about Sarah Palin’s son Trig who has Down syndrome. They are outraged on her behalf. They hammer home that the Left is a bunch of unapologetic hypocrites.

And Sean Hannity, oh my God, on his radio show and t.v. show he repeats daily —as indignantly as possible, “They (the Left) say we want kids with autism and Down syndrome to fend for themselves.” Well Sean, it is put up or shut up time. My three girls with Down syndrome cannot defend themselves against Ann Coulter’s use of their condition as an insult to her political enemies... are you gonna leave them to fend for themselves or are you gonna step up and call her out on this issue?

Ann has been made aware that her tweet was hurtful and offensive, and counter-productive to the advancement of people with disabilities. She has not deleted the tweet, nor tweeted an apology. Will those who pay her and give her a daily platform stand up for what’s right? Without reminders from us, it is doubtful.

Please email Sean Hannity and Bill O’Reilly (oreilly@foxnews.com) and tell them to “put up or shut up” to either defend people with Down syndrome or stop pretending to care about them for political purposes. And please take a minute to tweet @anncoulter to remind her that the r-word is offensive and an apology goes a long way.

Oh You Big Bad Ass

Did you know there are disabled child hunters (DCHs) out there... searching, trolling, lurking... putting a great deal of effort into finding children with Down syndrome just so that they can publicly display their scintillating brilliance with comments like,

“Hey you mothers of Down syndrome kids, you should have swallowed, bitches!”

Oh my, thanks for the heads up, you absolute genius you. Did you learn that from your daddy? Let me guess, if I click on your profile I will see that you are a big bad ass in a band named something like, “We Eat Puppy Shit “complete with a five minute Photoshop logo of black and red splattered fonts and graphics...



And when you get together with your like-minded rockstar friends to drink beer, smoke some dope, and jam out (hopefully with a few overripe teenage hangers-on to watch), do you share your wit? “Hey dudes, guess what I did today? Ha, I fucking left some bitch ass message on a Facebook group board all about retards. I told ‘em they shoulda swallowed, har har har!” Does that impress your posse?

Let me tell you something you big bad dumb ass... It doesn’t hurt us the way you probably hoped it would... no no, instead it makes us all instantly wonder what went wrong with you. Your vileness is a reflection on you, not the strangers you are aiming at. I naturally assume you are relatively healthy, possibly even good-looking, maybe you even have a few ounces of talent on that bass... but you’re broken, everybody can see that. You may as well have taken out an ad in a national newspaper stating that your life sucks and that nothing will ever work out for you, because THAT IS HOW IT GOES for guys like you.

Look in the mirror dude, and repeat after me, “I am a man who hunts for disabled children so that I can make fun of them and hurt their mamas’ feelings. That makes me feel powerful. Why do I feel good when I make women and children feel bad? Because I am not cool. I am a jerk. I need help.”

When you finally realize what you are, here is the number you'll need: 1-800-273-8255.

I See Evil People

It’s an epidemic. Everywhere I look on Facebook, I see evil people...

Just last week I found out that the Waltons (of Walmart) are evil. I did not know that they enslaved poor people everywhere, and are the reason poor people stay poor. I had no idea that they force people to work and shop at Walmart, thereby condemning them to a life of poverty. They make people wear cheap clothes (made in China) and they make people eat unhealthy foods (made in ?). Walmart stole more from us than the combined wealth (can you call it that when people are poor?) of the lowest 40% of our country. Those bastards.

 And then there are those evil fast food CEOs who are lining their pockets by blocking people's arteries. Thankfully New York’s Mayor Bloomberg is taking on those demons... if we are lucky he will protect NYC from 20 ounce sodas. But who will save us from Chick-fil-A? Those bigoted hatemongers, with values and beliefs that we do not agree with, use their profits (that they steal from us by force) against us. Thank God (um I mean thank nothing) that there are local politicians in Chicago, Boston, New York, and San Francisco who will block the expansion of evil businesses into their cities... because you know, I heard that if you buy a chicken sandwich from a hatemonger that makes you one too (unless of course you balance it out by picking up some Starbuck’s afterward).

Damn, it seems like no shopping trip is safe anymore. Drop a dime in the wrong place and I just might be keeping my friends from getting married or I may be helping to hold down the poor. This kind of stress might drive a girl to drink (hopefully not imported Vodka) or even to...

Bring on the smokes! Go Big Tobacco! 20oz sodas, clothes made in China, and greasy chicken sandwiches ain’t got nothin’ on you. Thankfully your CEOs know enough to shut up and pay up. Thankfully our politicians know enough to line their coffers (our coffins?) with people’s addictions... to the tune of more than $24.3 billion in gross cigarette excise tax revenues in FY2009 alone. Thankfully we all benefit from the death-colored revenues generated by Big Tobacco.

So skip the chips at Walmart, skip Chick-fil-A, skip Mac D’s and give your kid a smoke instead. You will be doing us all a solid.

Advocacy Hurts

I have begun making an effort again to speak up when I read things about Down syndrome that are untrue... stereotypical cliches that get passed around to fill article space. But after just a few days back at it, I remember that it really hurts to engage with strangers who think the people I love are worthless.



For the longest time I had to stop reading the articles and posts that appeared in my “Down syndrome” Google alert. Eventually I just stopped the feed because reading what others nonchalantly write about people with Down syndrome is just so painful.



To believe them would be to believe that my children won’t grow up to be adults. They don’t have potential. They may end up in group homes, in which case it would have been more humane to abort them before they were born. My children are suffering, and they are burdens on me and my husband, my other children, my extended family, my community, and my country.



When I read things like that scattered here, there, and everywhere, I can’t help but want to say, “No, no that isn’t right. It isn’t that way. You’re being unfair and creating negative perceptions that have effects on people.”



But if I open my mouth, I am told to STFU. If I don’t shut the F up, I am mocked and put in my place, and invariably someone will point out that,

“not everyone with Downs grows to be an adult and is successful, it can be very dibilitating.”

(Yeah, because some people with “Downs” grow up to be, I don’t know, aliens maybe?)



And you can’t argue with that. I know you can’t because I have a child with Down syndrome who might not ever hold a job, fall in love, or leave home (until I die and she has to be put in a group home). I could say that it isn’t the Ds that makes her this way, but you could say she would not have contracted meningitis if not for having a heart defect related to her Ds that kept her in the NICU and started the downward spiral.



But I love her.

Did you catch that? She may be low-functioning, and difficult at times, but I love her. She may never learn to read and write. She may never stop throwing things. She may never grow up to be like anybody else, but I love her.

“It might be alright for you, but not everybody feels that way. Not everybody was cut out for that life.”

Really? I cannot imagine the woman who could have birthed her and raised her thus far who would not love her. It is for everybody, love that is.

The French Strangers - Part Two

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.

The French Strangers - Part One

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.

"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.)

Get Outta the Trunk

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.

The Wrong Orphans

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

Dear Anon, Now That You Mentioned It

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.

Bless Me Father, For I Have Sinned

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.)

STFU Sarah

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

(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.

Where Were You?

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

You’re So Predictable

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

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

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

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

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

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

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

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

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

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