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.

Disability Snobs

It all started when friend of mine left a comment on a blog post about how she sees different disabilities, uh... differently and cannot lump them all together when thinking about big questions like "Are People With Disabilities Contributing Members of Society?" She referred to herself as a disabilities snob.

Then another friend asked what that was. Then someone else posted the question on their Facebook wall. Then a bunch of people chimed in, and eventually the whole thing left me wondering what it really means to be a disabilities snob.

Ok, so snob connotes superiority and a condescending attitude toward someone believed to be of a lesser position. But I don’t think that is how Kim meant it. I think she was saying it like I might say "Masha is a shoe whore." No need to get all stuck on the word whore, know what I mean?

If I were a disabilities snob, would I think my kids are better than kids with other disabilities... or even better than some other kids with Ds? Would I insist on all inclusion, all the time? Would I cringe when I see my girls dancing in a room full of people just like them... only grown up? Would I do my best to raise them to not want to be part of the "special clubs"? Would I feel insulted if a local church invited my girls to come to a special activity night for people with disabilities?

If yes, then I am definitely not a disabilities snob because none of that is where I am at these days.

I can see how Masha and Autumn could grow up to be super friends to other people with disabilities like their own or even more profound... The two of them go beyond tolerating their sister... they include her. I think M&A can move in both circles... perhaps sometimes learning or playing in a fully inclusive environment and other times doing the same in a group designed just for people with disabilities. I want Masha and Autumn to spend time in both worlds because I believe that is how they will bridge the gap to make it one world.



Right now Masha is in Gen Ed Kindy which is a lot of work and stress for me, and so far I am not sure it is the best way for her to learn but she sure is coming along. I wish though that I could find some extracurricular activities, like a dance class, that was only for children with special needs. Why? Why not fully include her all the time? Because sometimes it would be nice to just have her be exactly who she is without the pressure that comes with standing next to The Ableist.

The same goes for Autumn... she is in a reverse-inclusion preschool, which means there are more typical kids in her class than children with identified special needs. But it would be awesome for her to have someplace to dance, or play, or just be herself with a bunch of other kids who aren’t seen as The Species Typical.

That is why in some ways, our house is the best place of all. We have five young children, boys and girls, typical children and those with differing needs whose levels range from mild to profound depending on the activity. Sometimes they all get on the table and dance together, or they all scream it up tearing apart the living room, other times they break off in natural groups... that change players depending on what is going on... Masha and Autumn sometimes keep up with their brothers playing ball or wrestling, other times they are perfectly happy to chill out with Kimani (ok, so no one ever really chills out with Kimani because chill is just so not her, but you know, they play with her). It is a place where they can all just be themselves, where they get to decide when to be "fully included" and when to be "self-contained".

The bottom line is that I think most adults with Down syndrome are on the cusp... There are times they are interested in and want to be a part of typical age appropriate activities, and there are times when they would be perfectly happy to spend a Friday night at home watching a Disney movie rather than hanging out at the local club drinking Margaritas. To try to push or pull them one way or the other, that to me is what it means to be a disability snob.

There are a lot of people talking about these issues, a lot of talk.... lots and lots of talk. But not so many voices from the ones who are walking the crawl. I want to hear from those parents. What do they think it means for their child to contribute to society? What do they think it means to be a disability snob? What do they think of ableism?

Authenticity and Vulnerability

I didn’t write that post yesterday to invite ego stroking (though I admit it was nice to hear from so many people that you give a hoot what I have to say.) I wrote it because I was really struggling with how honest and vulnerable I am willing to get in my writing. Because there are consequences that come with being authentic and sharing the real deal.

While the comments I received here and on FB were encouraging, one of them was a game changer. It came from an IRL reader who I went to grade school with. I wish she and I lived close enough for coffee dates because while she was cool in school (heh heh) she grew up to be even cooler and has had more than her fair share of grief and life experience. She directed me to a blogger named Brené Brown who writes a blog called Ordinary Courage. My friend suggested I watch a video, and I did.

That was it, that was all it took to know that I can overcome my fears (and an unhealthy dose of shame) to step off the cliff and be authentic and vulnerable. It’s not like I won’t lighten things up with a cake pop post here and there but I believe it is time for me to dig deeper into my heart and mind and let the b-side of me out of her cage.

Just promise me that if you are going to stick around for it that you will be gentle me :-) Oh, yeah and those of you who know me IRL, just pretend someone else has appropriated this blog. Deal?

It Is So Hard to Keep It Real

Last night I wrote a post about the days when I was not an ok mom (prompted by an excellent post on Gillian's blog.) It was an honest post that described my struggles to overcome rageful reactions to ordinary kid stuff that my kids do. It was the kind of post that might touch someone out there who needs to hear that she is not alone, that there is hope, and that change is possible.

But I did not end up posting it. I may never post it. In fact as I read through my posts of late (the past year or so) I wonder if I will ever post real stuff that matters ever again... because too many people I know IRL read this blog (ahem, not that you would ever know that by the comments or rather lack there of.)

I struggle as a mom. I have body image issues. I am sad about my daughter Kimani... it twists my heart and mind. I have not-so-nice but true and rather funny opinions of some people around me and in my virtual world. I am seriously no longer convinced about God. I hate being a SAHM. I miss the freedom to travel. My husband doesn’t get enough sex. I am often tired of being me now and ache to be me then. I am conflicted about abortion. You get the idea.

But if I step off the cliff and write about all that, what does it really matter and in the long run it will only hurt me. When I go to publish my nonfiction book about parenting infants with Down syndrome, people will say, "That is the same woman who writes all that awful crap on her blog." When I try to set up playdates for my kids the moms will remember what I have written here and think maybe they don’t want their kids around her kids. I have already lost much of my Christian readership and would likely lose the rest.

Why blog anymore? I don’t know. There must be a reason I still feel drawn to write the truth as I see it.

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.

It's a Hop!

Guess what? October is National Down Syndrome Awareness Month. This means that we-who-love-someone-with-Ds will go out of our way to tell those of you who may not even know anyone with Ds what its all about.

This year my friend Meriah (With a Little Moxie) and I will be hosting a Ds Awareness Blog Hop (beginning Oct 5th) as a part of the T21 Writer's Alliance.

First things first: What is a Blog Hop?
A blog hop is when a bunch of bloggers share their posts at the end of our “hopper” posts by entering their url and blog name in a “linky”. Once a fellow blogger submits their link, it comes up as a part of a collected list. From the list, visitors can click and check out the writers on the list to read their posts.

I have never hosted a Blog Hop before but I am pretty excited to do it. I enjoy reading all my friends posts and having them all linked together is such a great way for we slackers to catch up with everyone.

October Down syndrome Weekend Blog Hop
The point of the October Down syndrome Weekend Blog Hop is raise awareness about life with Ds, connect the Down syndrome blogging community, and to inspire each other.

Those of you that are participating in the 31-for-21 Blogging Marathon, please select the one post you liked best that you posted in the course of the week and share that on the Hop.

For those of you that are not participating in 31-for-21, please select either a new post or a favorite past post and share that.

For Those of You that Like Prompts
Ellen Stumbo has shared optional prompts for the hops. They are:
Oct 5 – 7: A defining moment
Oct 12-14: If I knew then what I know now
Oct 19-21: Celebrating milestones
Oct 26-28: What I look forward to

Those (wonderful) prompts are entirely optional: take ‘em or leave ‘em.

Blog Hop Button

<a href="http://theunknowncontributor.blogspot.com/"> <img src="http://farm9.staticflickr.com/8456/8030173311_c6e1064e3d_m.jpg" alt="T21 Alliance Blog Hop" width="150" height="150" /> </a>

Share this Hop! The more the merrier!

Blog Hop Code
There will be a link "get code" link at the bottom of each blog hop – it would be great to click, copy and paste the code to your own blog. When you do that, you yourself become a host for the Blog Hop. You help share the diversity of expression, thought and belief in our writing community when you include the voices of everyone else in the Hop.

Anonymous said...

The following is a response to my Question of Faith post. One of the best things about blogging is hearing other people’s thoughts on the things that matter to me.

"Leaving God out of this story entirely.... there is a human in the world by the name of Kimani and she may have to live her life more instinctually than thoughtfully, and you will be the observer. You will be the guide standing by to steer her life in some direction. She and you will be one in so many ways. If you had certain dreams and desires for the future of this child, they are changed.... so where do you look when you look into her future; into the mystery of her? Maybe someday you will see a grand purpose for her life on earth... maybe not, but there she is. She just is. Her hand is always in your hand. There is no explanation for Kimani. There is no explanation for love... love just is."

Anonymous has got me thinking about my dreams for Kimani.

Drama 101

One of my best girlfriends is a Taylor Hicks fan. She is single, no kids, and well-resourced which positions her to be a very good fan (not to mention the fact that she is a type-A personality and rocks everything she sets out to do). After all these years she is pretty deeply rooted in the “fandom”. And let me tell you, there is serious drama therein.

I have always thought her drama stories were funny, even the ones that pissed her off. (Ok, at this moment my phone starts ringing and I get reamed out by said best friend ;-) Because I always thought drama was a waste of time.

But for the last couple months it has been me dumping my stories on her.

Usually I ignore drama, and if something annoys me I write about it in my own subtle way, like a couple years ago when a particular blogger wrote a birth story that went viral. She claimed to be over her child’s diagnosis overnight. She subsequently wrote a few posts that seemed dismissive of the community. But based on the undertow of her posts and her presentation during interviews, I wasn’t completely sold on the picture she was painting (or should I say photographing). So I wrote about how it made me feel, and that was that.

But recently there was a new children’s story published. I did not like the message it promoted about Down syndrome. I stood up for my daughters by writing a joint letter to the author, as well as a private letter to the author.

And then there popped up a blogger who is bent on publicity. He has worked very, very hard and relentlessly to promote his blog. And, finally when the right opportunity presented itself, he jumped on board and hit the news circuit. Some things he said in interviews were offensive to the community. I wrote to him privately and shared my thoughts, concerns, and unsolicited advice with him.

But not everybody chooses to deal with their feelings and concerns privately, and that is ok. So lately the blogs and FB have been abuzz with pro/con this one or that one posts. And that’s ok too. What isn’t ok (to me) is the backlash in the comments.

The comments... filled with sarcasm, bitterness, anger, frustration, defensiveness, and denial. I want to say I am shocked, but I am not. Even the nicest, most levelheaded, most Christian, most thoughtful, most whatever people tend to let their worst side out in the anonymous world of the Internet.

Rather than sharing my opinion of this blogger or that writer, I will ask myself, what is the common thread that has so many people I like and respect bothered (including me)?

I think I know what it is. Each of these people I mentioned has stepped up and taken a very public role in the Down syndrome community. Each one of them is making money off that role. Each one of them is spreading their message far and wide. But the problem is that it is just that, their message. Not my message, not my daughters, not my way. They are not the Lorax and they don’t speak for the trees, know what I mean? But the outside world perceives them as if they do.

Some people are ok with that, as in “any good press” is a good thing, no matter the message or the source. Others are more discerning and although they want the good press, they want more so to take those rare opportunities to spread an advocacy message that really does reflect and include the whole community.

What I have learned from all this? That I owe my girlfriend an apology for secretly believing that adult drama was found only in the Tayor fandom.

What's It to Ya?

Many people find this blog by searching for a mentally retarded baby. If you google that term in images, Kimani comes up near the top of the list. The post you land on is “It Wasn’t Meant that Way.”



I am such a curious woman. I wonder about all the reasons a person might be searching for an image of someone like Kimani. Maybe you are a pregnant mom who just got some scary news. Maybe you are a college student doing a research paper. Maybe you are someone searching for nefarious reasons.

Whatever brought you here, I hope you gain something positive about mentally challenged people.

My daughter Kimani has Down syndrome. She is three years old now. As an infant in the NICU she contracted meningitis and suffered brain damage resulting in cortical sensory impairment. What that means is that while her senses (sight, hearing, feeling, etc.) all work correctly, the cortex in her brain does not always properly process the information it receives. At times she is legally blind, or deaf, or unable to feel things. It also means she processes information quite slowly when she is stressed or tired.



As you can imagine being sometimes blind and deaf and running on less neurons can make learning difficult. It can also make day-to-day living kinda frustrating for her and for us.

There is a huge difference between a person with Down syndrome and a person who has suffered brain damage. Apart from my Kimani’s unique and gorgeous face, which gives a hint of that extra 21st chromosome, she does not represent a typical child with Down syndrome. I have two adopted daughters who both also have Down syndrome and they are similar to each other in development and very much like my two typical children who have just 46 chromosomes.

Although Kimani has difficultly with learning and retaining new things, she can walk and climb. She can say a few words and can sign a few more. She is cooperative with getting dressed and other similar activities. She transitions well from one thing to another, sleeps like an angel, and is doing well with potty training. She loves the pool, her iPad, and dancing around in my arms to 70’s disco music.



If you take some time to read around this blog you will encounter the power Kimani has wielded in my life, and how that power has infused me with renewed creativity, brought me emotionally to my knees, taught me new ways to value individuals, and whispered love secrets into my heart. You will also find lots of other beautiful pictures of Kimani.

I invite you to share with me what it was you were looking for and if you found it. I accept anonymous comments if you wish to remain private.

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.

Lost in Kyiv

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

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

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

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

The Things I Do For You

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

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



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



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

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



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

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

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

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.

Honesty, Authenticity, and the Pursuit of Truth

“I love your honesty.”

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

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

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

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

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

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

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

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

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


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

In The Moment

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

So now maybe this...



will remind me of this...

The B-Side of Summer

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



from these bruised flowers.





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





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





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



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





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



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

Doubting TUC

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

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

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

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

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

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

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

5:21 and 7:27, isn’t she adorable?

Blood Brothers

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

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

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

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

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.