Wednesday, November 10, 2010


Been a long time since I've posted... I've been on Facebook (you can add me as a friend if you want) sporadically instead of here, but really been off Internet most of the time. Sort of back now, I guess.

I like posting short updates on Facebook, but let's face it... perfect platform for short updates about the family and what not, but it's not the right place for venting about OTHER PEOPLE who don't have Ds in their lives. And I'm not talking about everyone who doesn't have Ds in their lives; just the busybodies and the woefully ignorant.

Kiki and I have been blessed in that over her 3 years, we really haven't had many negative public encounters. Most people we engage with are pleasant, smart people who focus on interacting with Kiki, asking her age, her name, complimenting her smile, her giggle, her beauty. These are the people I love.

Then there's the lady today at WalMart. We were shopping for long-sleeved shirts. Kiki was sitting in the cart, stroking the fabrics and waving and smiling and saying HI to people who passed by. I probably had a sourish look on my face because as I was shopping, I was daydreaming an engaging little drama (an amusing activity I often engage in because in my experience, imaginary drama is way more fun than the real thing).

Regardless of the look on my face, I was enjoying myself. WE were enjoying OURselves.

Some woman with a lovely child on her hip saunters up to me and says, "I just have to say God bless you, ma'am. You hang in there."

I felt myself go entirely red, immediately feeling guilty because of my daydream possibly garnering some kind of empathy from someone, and then I caught her nod slightly at Kiki, and the look on her face... I don't know. It suddenly pissed me off. "She's fine, actally," I said. "WE're fine, thank you."

"Oh, of course, of course," she said, smoothly, "But something just told me to come say it to you. God bless you, ma'am. God bless you."

And then she sauntered back off her cave.

And instead of thinking, "Well, she meant well," I suddenly wished I'd punched her in the face. Maybe I've reached my limit of people who mean well. I don't know. I mean I really wouldn't have punched her; she was carrying a child.

But I really wish I'd schooled her, along the lines of, "Really? You're taking time out of your shopping to do something you obviously think is saintly, and the best you can do is imply to me that my life is substandard and requires divine intervention based solely on your impeccable powers of perception that my child has a genetic condition? Let's just assume you mean well. Here's a good deed in return. Next time you feel compelled to 'offer comfort to the unfortunate', say something like, 'Your child is gorgeous. How old is she?' or 'Your daughter has such a winning smile! What's her name?' Now THAT would have made my day. Instead, right now, you've utterly infuriated me."

Unfortunately, I do not think well on my feet. It's the only thing I truly, utterly hate about myself.

You know, I try not to dwell on the negative. It's not constructive. I'm actually way more hung up on her baldness than I am her Ds, if that even makes sense. Actually most of our negative public encounters are those related to her lack of hair. Kids notice it; adults query if she has cancer or had brain surgery. I suppose in some ways her alopecia has made me almost oblivious to her Ds; so when someone notices her Ds, it takes me totally by surprise.

Still, she's 3 years old, and this is only the second public encounter in regards to her Ds that has left me fuming afterwards. I think that makes us much luckier than most.

Monday, August 23, 2010

Kiki's First Day of (pre)School - A Photogmentary

6:45 a.m. Mommy? Is that... you? Why are you up this early? It's almost still dark!

Well, I'm not gonna argue! Let's go go go!

7:15 a.m. Mommy, why are you taking pictures of me eating breakfast? You are starting to FREAK ME OUT.

7:45 a.m. Okay. I've figured out we're going somewhere. You don't dress me up like this to just stay home. So where are we going, anyway?

8:10 a.m. I am cute! I am so cute! I can keep this up all day!



Except she sruvived fine, was happy, came home happy, everyone was happy except it was so hot everyone got mad and fought and sulked and all that but really a super, super day.

Except for the part where the night before I had nightmares about forgetting her lunch and sending her to school in her pjs and missing the bus and none of them, none of them, not ONE of them was worse than having to walk away from that bus while she screamed.

I cried a little. I won't lie.

(okay I bawled like a baby.)

(in a mature adult good way.)

Thursday, March 25, 2010

3 is Coming

That sounds like atrocious grammar: 3 is coming. But it is. That 3rd birthday is just around the corner.

Sometime in early March, I took Kiki into the preschool for testing, to see if she qualified for further therapies. They kind of (bluntly) hinted (told me) I should wait out in the hall and do some paperwork, but I cheerfully insisted I was curious and wanted to watch. I stayed out of their way and didn't interfere. I was a good mom.

They did the same tests her other therapists do during test time, but they didn't give her any verbal clues. It really proved to me that even though Kiki is not terribly verbal (she's got a building vocabulary though, so I think it's a matter of time before she's true to her Greene/Erlitz roots and starts talking nonstop), she understands a whole lot of speech. For instance, if you give her a block and tell her to put in a cup, she'll do it. If instead you pick up a block, put it in a cup, take it out and give it to her, she will just put the block back down on the floor where it started.

Which is fascinating to me, but to her testers, it just meant she can't copy what other people do, which is bullshit (she can so!!), but hey. I didn't interfere. I did tell them though that she's used to following verbal directions, not non-verbal ones. She did finally get the hang of it though.

Anyway that was weeks and weeks ago, and just last week they finally called to schedule The Meeting. They have to have The Meeting before her birthday, which is April 11, so they're kind of anxious to have it happen NOW. I'm trying to find a time that can accomodate Kipp, but they won't meet in the morning (that's when they see their students) and not on Fridays, so it seemed pretty hopeless.

But I'd forgotten that Kipp gets one Wednesday off a month (he works a grave shift one Sunday a month), so I'm hoping to reschedule for the Wednesday just before her birthday. I'd have called to reschedule this week but... spring break.

Tomorrow she gets her eval from First Steps. Normally she'd be graduating from the First Steps program in a couple of weeks and starting preschool, but I've gotten advanced notice from the preschool that she'll qualify for continued therapies, sooo.... I can opt to wait til August to enroll her in school and continue with First Steps throughout the summer. Yay!

She's walking everywhere, though she still looks unsteady. She doesn't fall nearly as much as you'd think. She does love to walk from the car to the store, in the store, anywhere I'll let her walk. She's figured out how to twist her hand out of mine, which scares me to death. I mean she can't run fast now, but I can't run at all, so it's only a matter of time before I won't be able to pursue her anymore.

So it's time for a leash. I don't actually have a moral dilemma about this at all, but I'm just dreading the social encounters that are bound to result from it. I'm already tired of the "Has she had brain surgery/cancer?" encounters and the more ambiguously-worded but you know what they're getting at encounters. I don't want to broadcast any more invitations to people when I'm out and about.

But in this instance, I don't see any alternative. She needs to walk; she needs the exercise and practice. She needs to learn what it means to behave in a store. And she needs to learn all of this without me having the constant fear she's going to get injured or lost or run into traffic.

I just hope I don't end up slapping some stranger. That would be bad.

About Me

I'm originally from the west coast, but now live in the midwest with my husband Kipp, our two dogs, my stepdaughter and stepson, and our youngest daughter who has Down syndrome.

Stats n Stuff

  © Blogger template 'Isfahan' by 2008

Back to TOP