Friday, September 28, 2012

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.

Thursday, September 27, 2012

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

T21 Alliance Blog Hop

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.

Monday, September 24, 2012

Nothing to Say

It has been four years since Kimani’s heart surgery and I don’t have anything to say about it. I can still get myself worked up about it by rereading what I felt then, but today, right this minute it feels like this is the same as any other day. So I guess, for once, it is a very good thing that I have nothing to say.

She, on the other hand, has something to say... “Eat cake... eat it with both hands. You know you want to.”


Wednesday, September 19, 2012

Happy Birthday Jade

After watching the last video I made of the girls, Jade asked me to make one of him. And so in preparation for today, his birthday, I dug through thousands of pictures and contemplated multiple songs... searching for the ones that would capture his personality.

It made me a little sad to do it. I don’t know, maybe it was seeing six years go by digitally in a couple of hours. Maybe it was because I miss every minute of those yesterdays with him. What I wouldn’t give to hear him reply in his 18 month old voice, “Don’t knooow” to any given question.

Yet while I cherish his past, I am excited for his future because every day with him is, as he would put it, “awesooooome!” Jade is a funny kid, a lover, a performer, and full of roar, as you will see in his video.

Wednesday, September 12, 2012

A Fart Changes Everything

I would like to tell you that being a mom to kids with “special needs” is no big deal, not different at all than having five typical children... but then I would be lying. Not just lying to make a point (like a good politician might do) but outright plain old lying, which is what I do to myself on this particular subject most of the time.

It is different, and lots of the time it is a big deal. Take this morning for example... it was just about 7 a.m. with the bus scheduled to arrive at 7:20. Masha was eating breakfast and letting me braid her hair. Autumn was sitting next to us enjoying her sliced banana. Suddenly I smelled a terrible fart that had made a silent entrance. I knew Masha was the culprit. I asked her if she had to go poop, and she adamantly insisted, “No, babygirl toot.”

99% of the time, Masha goes on the potty. She is very good about Number Two and has only had a couple “can’t get her pants off fast enough” poopcidents, so I let it go... because if I force her to sit on the potty when she really doesn’t have to go, it is just a 10 minute crying ordeal that would likely lead to missing the bus.

At 7:16, I piled three kids into the front seat of the van and drove them down the driveway to wait for the bus. I did the face inspections, wiping away crumbs or toothpaste... and there it was again... a real silent stinker. Now we all know that there are different kinds of gas... and this kind is usually a harbinger of belly ache poo. I firmly ask, “Masha, do you have to poop?” She gets very upset, stiffening up for a fight, “No, nooooo.” Then she proceeds to blame it on her brother.

A regular mom, a typical mom, an ordinary mom would just explain to her five year old that she can go poop and then mommy can drive her to school... and then her child would admit the urge or put mommy’s mind at ease with a convincing, “I really don’t have to go.” But no so in my case. Now the stakes are higher... the bus is down at the dead end turning around... seconds away from taking them for the day, and I have to decide what to do. Do I hold her back, literally kicking and screaming, force her onto the potty and wait out her tears until she gives in and poops (if in fact she really has to)? Or do I send her to school and risk an accident there?

My stomach is churning as I give over her backpack and let her run up the bus steps. If this were Jade last year I would have been like, “Oh well, I hope it doesn’t happen but if it does, c’est la vie in Kindergarten.” But this is MASHA, and if MASHA craps her pants in class that will be a whole different story... that will be a reason to say “she is not ready for Gen Ed.” That would be a reason to say she FAILED the probationary period and has to go to the special classroom where they think pooping in your pants is par for the course.

And so as a “special needs mom”, I get to spend the day worrying about her... Wondering if she really did have to go, and if she will be able to tell them and get her pants off quick enough in a new bathroom. Yeah, for me—the SNM, a simple fart changes everything.

After school update: Masha came home in the same clothes she left in and with no note in her backpack, so I am assuming she had no potty issues today :-)

Monday, September 10, 2012

Raising Cain

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

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

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

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

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

The boy sure is his mother’s son.

Friday, September 7, 2012

As Fate Would Have It

Did I tell you about the little girl my son the Gecko bullied in summer camp? No? Well she teased him about his name, and he pretty much decked her. When I got the call that night from the girl’s mother, I was a mess... shocked, sad, totally embarrassed and horrified by his behavior.

Soooo, can you guess whose mom is Masha’s Kindergarten aide? Yes indeed, and I am really happy about it.


It took a lot for her to call me to tell me what happened, and it also took a lot for my son to write a beautiful letter of apology. The day he delivered it, I ran into the mom in the camp parking lot. We had a wonderful talk and I left the situation feeling good about what had started off as something terrible.

When I brought Masha in to school for the walkthrough, there she was waiting for us with a huge smile. She gave me a hug and told me how excited she was to be able to work with Masha. I was thrilled and quite relieved because I have been worried about who would play this role for Masha.

I admit I had a fear that they would not choose someone who was looking forward to helping and encouraging a little girl with Down syndrome whose mom fought for her to be educated alongside the “regular kids”. I wondered if the aide would be well-educated, bright, caring, and if she would have a real desire to make a difference in Masha’s life. Well no more worries, and Jade (great name don't you think?) has already admitted to me that she is quite smitten with Masha :-) Here’s to a great Kindy start!

Waiting for the bus...



Wednesday, September 5, 2012

Ready or Not, There She Goes


She has been ready to go to preschool for a while, or so she thinks. It started last Spring with her following her big sisters to the door when mommy announced, “The bus is here.” She would bang her hands against the coat closet door and whine. Then she would escape after us out the front door and totter off the step.

Over the summer, in an ingenious move, she stopped cooperating with her EI therapists. “All done,” she would repeat over and over. She pulled a few sit-ins, started throwing their toys, and made numerous attempts to slip away from whatever room they were in.

On Monday I bought her very first backpack. All pink and flowery with a cute little brown monkey on it. She wore it around the house telling me, “Bye!” She was on a mission to find her shoes, and once she got them she was determined to have Masha put them on her. Co-conspirators, they pranced around (Masha in my black boots) with their backpacks on, blowing kisses and waving to us all.

shoesonThis morning I snuck quietly into their room and slipped my sleepy girl out of her crib. Right away she caught on that this was something exciting. She plowed through a banana and a strawberry Nutrigrain bar, while mommy fixed her hair all pretty. When it came time for socks and shoes she signed and said both as her little feet came flying my direction.

Once she was all ready we passed the time playing with her backpack. “Zip” she said, opening up the front pockets. She removed her package of tissues and her bag of spare clothes, and then repacked them again. In, out, zip, unzip as the minutes passed and daddy snapped pictures.




She tried to wear the backpack but overloaded as it was with day 1 supplies, it took her down.


The bus pulled up and outside we went. She was thrilled and tried to run to it while it turned around in our driveway. I watched her get strapped into the carseat and realized that I am nervous even though this is my fifth Very First Day of School.


Anxious excitement threatened to make me cry as the van door came sliding to a close, separating us. In the last second before the tinted glass hid her, I saw a look of realization come over her that said, “I am in here with these strangers and my mommy is out there.”


And for a few minutes after the bus drove off with my little caboose inside, I stood there wondering... is she really ready?

Sunday, September 2, 2012

Triple Blessed to Be a Ds Mama

Ever wonder what it is like to raise three girls with Down syndrome? Enjoy a sneak peek at life with my girls.

Saturday, September 1, 2012

Pro-Choice/Life/Adoption Plea

It is that time of the election cycle when abortion becomes a hot topic again. When does life begin, and who has (or does not have) the right to end it... and where is the line drawn between the right of the mother to not become a mother and the right of the developing baby to become a full-fledged infant?

I have said it before and I will reiterate it now, I am pro-choice. I wish that every pregnant woman could choose to continue forward, but I get it... I understand the many reasons why some can’t or won’t. And as long as that decision is made before 20 weeks, I am ok with other people deciding what is best for them and theirs.

I wish the pro-life folks, those that cannot reconcile the willing destruction of a fetus with their beliefs, would turn some of that compassion and urgency to help toward those already born and wasting away in orphanages and institutions. I wish the pro-choice people, those who know how destructive it would be to force unwilling women to become reluctant mothers, would turn some of that concern and desire for personal freedom toward the existing products of those who were born unwanted. In fact, I plead with everyone to consider adopting before voting. And if like so many people you feel unable to adopt, can you donate toward to the families who are forging ahead with their pro-choice/life adoption agenda?

Whether you are pro-life or pro-choice, you can make a huge difference in the life of an orphan. I know of a beautiful family who is adopting. They are taking a blind referral... which means that they do not even yet know the child they will save. They are moving ahead on faith and the belief that every child deserves life with a family to love them. The only thing standing in the way of this real flesh and blood child getting the chance to live a full life outside of the institution that awaits him or her is money. This family needs to raise $7000 in September to be able to complete the lifesaving process they have committed themselves to.

This morning while I was drinking my sweet latte, I got thinking that if every person I know who cared about either side of the abortion issue made the choice to give just the tiniest bit, even just the value of one cup of coffee, a waiting orphan could be saved. So as you get ready to vote with your heart this Fall, can you make a difference with your wallet today?

If so, please donate what you can to the Lakes family. Anything, any amount no matter how small will go a long way toward saving the life of a child who is waiting... waiting... waiting for them and waiting for you.

I remember when we were adopting... I remember worrying about funding... I remember that amazing feeling when a stranger gave a little gift toward our mission. Now because of the generosity of family, friends, and strangers, we have two beautiful little girls. Two girls whose lives look nothing like they did two years ago. Thank you for helping us pull it off, and thank you in advance for helping the Lakes family to do the same.