Thursday, December 27, 2007

Rounding out the week

Well, it was a busy Christmas!

As usual, we had Christmas Eve at Kipp's parents' house with the family. Kiki was not fond of the older children running around playing. Between getting over stimulated and her stranger anxiety -- well, darn it, Mommy and Daddy were the only ones allowed to hold her all night.

Still, she made her appearances, all decked out in her holiday dress, so Mommy was slightly mollified.

Speaking of behavior problems, our oldest is still doing the comparison sulk at Christmas. She's got to grow out of it someday, doesn't she?

Kiki's stocking was stuffed with plastic spoons with big handles and a feeding package that included a sippy cup. Soooo... at lunchtime on Christmas Day, I whipped those puppies out for a test drive.

She wields the spoon pretty darned well, I have to admit (I have video to prove it!) Granted, we have to fill the spoon for her. But once she realize I wanted her to grab for the spoon, she grabbed for it every time. She made it into her mouth most of the time, with the prerequisite stops in her hair, along her cheek, her eye, her nose, and all over the high chair. Best part is she LOVES it, so she doesn't even know she's working!

And before anyone hits me with the sippy cup controversy.... YES, I know, I've heard it from the doctors, the PT, WIC, blah blah blah, give 'em a REAL cup (with supervision), sippy cups are evil, yadda yadda yadda.

People, I have to draw a line somewhere. Here's my line. I understand that we're making progress all the time, and every decade or so we have to pooh-pooh a dozen or so tried-and-true parenting foundations and replace them with new and improved and oh-so-much-better blah blah blahs, but you know what? We did away with spankings a few decades ago, and look where it's gotten us. I'm not exactly sold on everything new; not everything new is improved.

And also, everyone I ever knew who raised children with sippy cups did not put them exclusively on sippy cups. You still get your child to try to sip out of a real cup, with supervision, as often as possible. Which she does, by the way, thank you very much. But her arms and hands are still not reaching for and grabbing and holding onto things, so I will stick to the sippy cup with handles for a little while, until she gets the knack of holding, tipping, and grasping, thank you very much.

I feel like ranting about misbehaving children and the virtue of fear in parenting, but I will put it off another day or so.

I only hope that I don't become one of those parents I complain about!

Okay... this is NOT a video of her feeding herself (I'll post it one day!), but I found this site that hosts videos and... well, we made this video of her when she was 2 months old, and haven't showed it off much. So here it is!!

Friday, December 14, 2007

Warm Fuzzy Thoughts

Getting towards the end of the year, when New Years' resolutions are almost upon us. I admit I almost never keep my resolutions, but this time of year does at least make me introspective and self-analytical. And some things this year have been "duh" types of epiphanies, but they've made me wonder how I've managed so far in my life being so stubbornly set on so many insignificant and ultimately futile little rebellions in my own mind?

My resolution this year is to truly learn to live and let live, live moment by moment, cherish the blessings, and not to dwell on the disappointments. Heh. If you knew me, you'd be laughing your ass off right now.

I'm behind on the 8-month picture debut. I know it. I got some cuuuuute pics of her last night in her high chair though. I even wiped her mouth off for them.

The wild child has taken to rocking back and forth in her high chair while she's eating. It's a new game. Her mouth has become a moving target. Ha! Catch me if you can, Mommy!

And now she also shakes her booty while we're changing her diaper. We can't help but shake our booties with her. It reminds me of Friends, when Ross and Rachel sang "Baby Got Back" to make their baby laugh. Shaking her bare booty to get us to shake ours makes her whole face light up. You are my monkeys! she giggles at us. Dance, monkeys! Dance!

Still no teeth. There are bumps on her gums but nothing as yet is breaking through.

Ohh, an update on the fluoride thingie... someone had posted a comment about the bad effects of fluoride. Which panicked me, and I read up as much as I could find on it, and then took it up with her doctor, the hematologist when we were in KC, a friend of mine who is a dental assistant, and even more recently the geneticist. All of them were in agreement that the correct dosage of fluoride has been proven to have extremely beneficial effect on developing teeth.

And I may not have mentioned this, but the town we live in does NOT add fluoride to its drinking water. And I checked the dosage on the vitamin supplement I'm giving her. It's actually well below the "danger" dosage I've read about in articles.

The one thing that's beginning to irritate me though? I mentioned to the geneticist that Kiki's almost constantly constipated. Downs babies evidently have problems with their digestive systems anyway, and it turns out that the iron in the formulas makes it worse. So I thought, okay, I'll find a formula without iron.




I don't think such an animal exists. I mean it's bad enough that you almost have to go to a vitamin store to get a vitamin that doesn't have iron in it (I am horrendously sensitive to iron supplements. They make me sicker than a pregnant landlubber at sea with the stomach flu who ate bad spinach dip.), so I figured it might be challenging to find a formula without iron. But no. Not challenging. IMPOSSIBLE.

So we shall continue with the constant dosing of prune juice. And peaches. And I finally found white grape juice to make her cereal with, so hopefully that will work too. NO RICE CEREAL NEED APPLY. Jeez.

Monday, December 10, 2007

In the space of one day...

On Sunday, Kiki:

1) Sat up on her own.
2) Starting truly babbling (ba ba ba ba)
3) Recognized her daddy again and took a bottle from him


Sunday, December 9, 2007

Another milestone!

Okay. Typical Sunday morning, although not completely. We had Kiki sleep with us last night so C could stay out of the girls' way and sleep in the nursery. She slept in until 8:30, which is pretty late for her. Of course, it was still practically dark because the weather is dreeeeeary today. Good thing we cleared enough of the garage out so that Kipp can park his car in there, and he won't have to unfreeze it every morning.

I digress.

Tend to the dogs, change and feed the baby, get breakfast for the kids (which is a lie -- they do that for themselves, bless them!), put the baby in her swing until I get her playpen set back up in the living room, put the baby in the pen, then take a work call, then cruise back into the living room to check on the baby because she's raising a fuss and ....

what the...

how did....

did the girls....

they say no, so...

Somehow Kiki sat up. In her playpen. By her self. And was trying to play with her block. Or was trying to get back down. Either way she'd sort of gotten too far into a corner, so her head wouldn't let her get close enough to the block or get back on her belly without hitting the mesh of the playpen and blocking her.

Hence the fussing.

But, did you catch that?


Granted, she still sort of slumps forward when she sits unassisted, but let me reiterate. She was not on her back. She was not on her belly. She was not on all fours. She was on her butt. Technically? SITTING! POSITION! UNASSISTED!

I feel it's become necessary to set up a video camera, trained on her at all times.

Saturday, December 8, 2007

Hi Santa!

Well, we had breakfast with Santa. And a more authentic looking Santa you couldn't ask for either! He talked with the group of kids there gathered for breakfast, and then he read them a story, and then he got us all to sing Rudolph, and then he went off for his day of posing.

We kind of left before that because we learned 2 things: our older kids are TOO old for Santa, and our baby is too young to wait for anything. So, no photos with Santa yet, but ah well.

Today was B's birthday, so I took her shopping for clothes after the Santa thing, and then we came home and had a family party. Her cousin is spending the night, and Kipp announced it was a girls' night, so they have exclusive play rights on the Wii, while C is upstairs doing something on his own. Which sounds sad except that C is usually pretty much happier doing his own thing anyway, and with B distracted, he has no one torturing him.

I know the stranger anxiety is a big, and actually positive step, in Kiki's development, and I tell you what, it's my first trial of patience as a parent. Luckily everyone is being very accomodating -- I was worried about my mother-in-law, but she held herself in restraint, though it was hard for her.

I've learned that if Kiki is in her car seat, her swing, her playpen, her stroller, or being held by me, she's not at all bothered by people messing with her and talking to her. It's only if someone (other than me) tries to hold her. That's when she seems to get scared and unhappy. On the plus side, she let Daddy hold her for about 20 minutes straight at the mall today! His goatee is almost back.

So the point of seeing a geneticist, apparently, is so that we have a specialist tracking her progress and medical record to ensure that all of the necessary testing is being done in a timely fashion. So far we are on track. He was also pretty impressed by her strength; first when he took her hands and moved to pull her up, and she took the initiative and pulled herself up instead. And second when she rolled over on her belly, got on all fours, and started rocking. She's such a little show off, but he was VERY impressed, so of course Kipp and I were very proud.

Oh, and I guess if she's lying down, she's okay with strangers too. Again, it's only if someone she doesn't know tries to hold her. It's all in the holding, I guess.

Well, not much more to update now. I wish I'd read up more on this stage before it hit. It makes me wonder what else is going to blindside me!

Thursday, December 6, 2007

It Has A Name

It's called Stranger Anxiety. Duh. And she'd begun to show signs of it a few weeks before Thanksgiving. And at Thanksgiving, it was at its worst. She managed to finally get comfortable with Grandma and Grandpa, but it took a whiiiile.

So the concensus on the web is that you need to work through it, but not by ignoring her distress. In other words, have "strangers" (who may include the non-primary caregiver parent in extreme cases -- prepare for some self-bashing in a few minutes here) approach the baby slowly, offering toys and whatnot, but only after having been in her presence for a while. And let Mommy comfort while people approach.

It figures I've been doing it all wrong, doesn't it? It's not like my instinct wasn't to rush in, scoop her up, and calm her down, either. It's more like everyone telling me, "You've got to let her cry sometimes." And my mother-in-law, God love her, who will cling to the screaming baby and tell me with a smile, "Crying babies don't bother me at all."

And then I'm torn between wanting to comfort my baby and feeling like an idiot and feeling like a mean daughter-in-law who won't let her bond with her own granddaughter.

I'm about ready to lose hair over this. Honestly. It's like I can't trust my gut, but I have to trust my gut, and whoever decided I should be allowed to have a baby anyway? This is RIDICULOUS. I SUCK AT THIS.

I knew about stranger anxiety, in an abstract way. I had all these plans that I would socialize Kiki from Day One with all sorts of people all the time so when this stage hit, it would not be like this. But I didn't take her out enough, obviously. The best-laid plans and whatnot. And okay, everything I'm reading is telling me this is normal and natural and moreover necessary in her development of her sense of self, but it still feels like I'm fucking up somehow.

I keep apologizing to Kipp because I feel like I did this, somehow. He tells me his older kids did the same thing at Kiki's age, and that it passes, and it's okay and it's not my fault.

Still. It would KILL me if she had decided I was the stranger.

And from what I read, no more sessions like last night. Slow and patient, without alarming or distressing her. Which should make it easier for me as well, as selfish as that sounds.

Only one more day til Santa. Let's just focus on that for a bit.

Tough Parenting

I don't want to sound whiney because I know I've had it waaaaaay easier than many. many parents, but so far this year I have faced what I'd consider tough parenting moments. And it's only my first year! I mean first there was the moment when they told me my newborn baby had been taken to the NICU; then there was the moment when I tried to watch them put an IV in her head; then there was the moment she banged her head on the sofa console thingie; then there was the moment we thought she might have leukemia; and so on, and so on.

Last night was one of the toughest parenting moments for me yet. And she wasn't in any danger, and she wasn't in any pain, and in fact, there was absolutely nothing wrong at all.

Let me begin at the beginning.

Our general routine has become like this: During the weekdays, Kipp tends to give Kiki her last bottle before she goes to bed. This gives them time to play and bond with one another. It's a very, very rare night this doesn't happen. And on the weekends, he does just about every feeding except the morning feeding.

Except for the last two weeks, Kipp has been working overtime, and he's missed a lot of the weeknight feedings. Then on Friday, he got a haircut and shaved his goatee.

Now Kiki loved that goatee. She loved to snuggle with her daddy and stroke his goatee, and she loved it when he tickled her cheek with it.

Kiki hasn't been big on strangers for some time now, since she's started teething or thereabouts. She's more patient with women than with men, but even then she'll only take so much before she's done.

And suddenly, Daddy became a stranger. When he tried to give her bottle last Friday, she rebelled. We laughed it off a little then, calling her a mommy's girl, lalala, and didn't think much of it. Then on Saturday, I had to run an errand, and while I was gone, it came time for her lunch, and Daddy stepped up, as he always does on the weekends, and...

When I came home, her bottle was untouched, and while she was no longer crying, she had the hiccup-breaths that come with prolonged and strenuous crying. Kipp looked exhausted. She had been screaming the whole time I was gone.

From then on, it's been the same thing. If she's with me, she's all smiles and laughs and giggles, and she'll take her bottle or solid food no problem. If it's Daddy, she'll scream herself into a fit.

On some level I suppose it should be flattering that I'm the center of her world and all, but I don't think it's at all healthy. I mean sure she's only 7 months old, it's just a stage, whatever, but it's troubling, very troubling, to me. It just can't be good for either of us that she's so suddenly and so completely dependent on only me.

So last night, we decided to take the bull by the horns. Daddy and baby, feeding time.

It was horrible. She actually, swear to God, screamed herself blue. It took everything I had not to swoop her up and comfort her, but she wasn't being tortured, she wasn't being ignored, she wasn't hurting, she was just throwing a tantrum. Kipp kept holding her, patiently talking softly to her, bouncing her a little bit, trying to get her to take her bottle. It went on for hours and hours or at least 20 minutes before we decided it was late, she needed to eat, calm down, sleep.

So he put her down in her playpen where she settled down IMMEDIATELY. We left her to herself for about 15 minutes, then I got her and fed her. With me, again, she was like a totally different baby: cheerful, playful, happy, engaging. When I put her to bed, she rolled over and immediately went to sleep.

We're hoping it's just the goatee. It's growing back, and for the first time since I've known Kipp, I'm actually cursing the fact that he's such a slow grower of facial hair. I'm not entirely fond of facial hair in general; mind you, I think it looks great on some men, but certainly not all men, and I prefer my husband clean-shaven.

But the baby has spoken, and the baby rules the roost. The facial hair must return.

While I know this ordeal has been bad for Kipp (if the roles were reversed? I wouldn't even be getting out of bed. Rejected by my own child? I can't imagine anything worse!), I think there's some part of him that is relishing this little bit about his facial hair now becoming a mainstay.

After all, he'll say in a few weeks when I start grousing about it, it's for the baby.

Wednesday, December 5, 2007

How Mama Kisses Santa's Ass

Sometimes (often) (all the time) I nap in the late morning. I can usually count on a nice little 2 hour nap sometimes, just before lunch. Now, I used to sleep very lightly. I'd wake up at the sound of the kids rolling over in their beds above us.

Not any more.

Now I sleep like the DEAD. Notice the caps? Yes, I'm emphatic about that. The DEAD.

So anyway, I'm in the middle of this little snooze when the phone rings, and evidently I hear it, and evidently I answer it, and evidently it's my husband, and evidently he's telling me something very important, and evidently he finishes, and evidently I hang up, and evidently I don't wake up for a second.

Because later that night, I suddenly ping on my latest obsession. And it's an obsession because I didn't even THINK of it until GoddessKristin mentioned having taken the GoddessBaby to see Santa. PING! It's SANTA SEASON! I have a child the perfect age to prop on Santa's lap!! MUST GO!

Anyway, I suddenly chirp up with, "Hey! We need to go to the mall and get pics of Kiki and Santa! We could do that Friday since you're getting off work early anyway!" (She has an appointment with a geneticist, which is a whole other blog.)

Kipp gives me this funny look. It's kind of a cross between wanting to laugh, wanting to cry, and wanting to shake me, all at the same time. "Don't you remember me calling you?" he says, patiently.

I think about it. Really hard. "I think... you called... and... wait a second... I dreamed you won something..."

No, Victoria, it wasn't a dream. My husband won free tickets to have breakfast with Santa on Saturday morning. SCORE! And we have C & B that day too! I mean they're kind of old for Santa, although C last year... heh... I was watching tv with him, and watching his reactions at commercials, trying to determine what he might want for Christmas. I got nada. Zip. Zilch.

So I went for broke and asked him outright what he wanted for Christmas. He gives me this HAUGHTY glare and pronounces, "I still believe in Santa Claus, you know."

So you know, the kid still believes in Santa Claus. Maybe we'll get a pic of the two of them together.

Anyway, I had to do some grocery shopping today. And I have been VERY GOOD and not bought things we Do Not Need, but Kiki needs blanket sleepers, and I KNOW she's getting some for Christmas, but 2 extra won't hurt, and oh my goodness I found the cutest little furry red boots with white cuffs in JUST HER SIZE, and also? The coup de grace. A darling red shirt that proclaims "I love Santa!"

My goal is to have Santa so smitten he shuts out all the other kids, and gives my kids everything he's got.

And maybe a second helping of pancakes. Yummy!

Thursday, November 29, 2007


We've been having an ongoing argument in the household as to what constitutes irony. To annoy me further, the Mr. has taken to ending each heated debate by singing the Alannis Morrisette song that sparked the debate in the first place. Three years ago, mind you. Why it has reared its ugly head again in the past month, I will never know.

I maintain that there is nothing in "Isn't it Ironic?" that is, in fact, ironic.

The Mister insists that finding 2,000 spoons when all you need is a knife is truly and inherently ironic. He is vehement about it. It makes me want to tape a knife to his forehead.

"So tell me what IS ironic then!" he demands.

I have to think about it. I am not an ironic person, all in all. I mean I get the literary gist of irony, even if I can't quote the actual definition (which is probably unhelpful anyway, as it is most likely listed as "Irony: the state of being ironic." I hate that.)

I finally come up with Jim Fixx. It is ironic that while jogging to increase his lifespan, he dropped dead of a heart attack.

The Mister says that he could have dropped dead of a heart attack at any time, and jogging had nothing to do with it.

Sometimes I think he is purposefully stubborn just to make me crazy.

It all finally culminated this week while we were watching Heroes. He paused it in the middle, and announced he was heading to the garage for a cigarette. He waited for me to move. I did not. "Aren't you coming?" he said.

"Yes," I said. "I'm trying to move, but my super power seems to have kicked in at an inappropriate time."

He thought about this for a minute. "Your super power is super speed, isn't it?"


"And when it kicks in, it paralyzes you?"


He grins. "Now THAT is irony."

At last! The debate is over and dead. Whew!

And of course, now that it's all over, I remembered the Gift of the Magi, which is probably the icon of literary irony. But I am NOT reopening the irony debate with that one. I am not, not, not!

NOT, I tell you.

Hell, I probably will. I'm such a stinking masochist.

Sunday, November 18, 2007

All's Good

So we took Kiki to KC on Thursday, and the short story is: all her blood panels were normal. Yay!!

Now I've been a big city girl my whole life, so the fact that we had to drive 4 and half hours one way to see a specialist gave me a special kind of thrill. I felt like Laura Ingalls or something. I know that sounds grossly and spectacularly ignorant, but it's true. I swear, if I had to drive 6 hours to buy some special electronic doohickey we couldn't live without, I'd be beside myself with glee. Of course, since the Internet is everywhere, and yes, Virgina, we have Best Buy here in town, that's highly unlikely, but still.

Anyway, I discovered something last night about my communication (lack thereof) with my husband.

Okay, when the doctor first contacted us to tell us Kiki's blood tests were abnormal, and referred us to the hemotologist in KC (who was awesome by the way, and Mercy Children's Hospital -- I think they should decorate adult hospitals whimsically too, honestly. As we were leaving, we actually heard a little girl saying she wasn't ready to go home yet.)

I digress. When the doc told me Kiki's white cells and lymphocytes were high, she didn't tell me in so many words what that could mean. I automatically assumed leukemia, but I didn't ask (denial? probably). And I dutifully repeated to Kipp everything she had told me, but I neglected to add my suspicion that they suspected leukemia. He even asked me what it was they were specifically testing for, what the symptoms added up to, and I told him I didn't know. I mean technically, I didn't know because again, I didn't ask.

So when we get to KC, the first thing the hemotologist asks is what Kiki's doctor had told us. I repeated all the stuff about the blood. He nodded and said, "But do you know why you're here today?"

And I replied, "I assumed it was to test for leukemia." Which he immediately confirmed.

Now I had been talking to YarnHacker the night before, and talking about the symptoms of leukemia, and how I'd been watching for them. Kipp had kind of overheard it, but then didn't follow up on it. But it turns out, the thought of leukemia had never even crossed his mind, and the night before our trip to KC was the first indication he'd gotten that it was a possibility.

So he started asking me questions about what I knew about leukemia while we were waiting for Kiki's test results. I'd never seen him look so grim and tense while he was listening, and I thought at the time that it was odd that he'd waited until the day of the tests to ask me these kinds of questions, but I just went along with it.

And I found out for the first time last night, while we were relaying the story to some friends that he didn't even know leukemia was a possibility until the hemotologist said so.

I'm not sure why I just assumed he'd make the same logical conclusion I did; I obviously have more information and experience re: the blood stuff than he does, and I should have realized that. I guess I just didn't want to say it out loud. And in fact, I was sure I'd hinted around it the first day, but he just didn't pick up on it.

I think the problem is that denial about dire things is tripping up our normally pretty clear communication channels. Going to have to watch out for that pitfall, because that could get scary ugly fast.

Well, I'm just rambling at this point. Main news: the baby is healthy! She's had her flu shot (which she hated), and she's got a slight heart murmur (nothing to be worried about), and she's healthy and happy, and God, I am so grateful for that. Thank you. Amen.

Wednesday, November 7, 2007

I'm a Freak

I have the weirdest baggage of fears. I mean your typical mom fears the usual, you know, that the baby may fall over and get a lump on her head, or get herself into trouble while crawling about. Get lost in a store when she's a toddler. Normal fears.

I'm afraid that 1) someone is going to legally take my baby away from me and/or 2) someone will make my baby hate me.

See? I told you I was a freak.

Of course it's too soon to tell if I'll develop the normal fears. She's neither walking nor crawling yet. The most danger she seems to pose to herself is how hard she bashes her head with her own rattle. And that doesn't get any reaction out of her at all.

Sunday, November 4, 2007

NaNo Blow what?

Shit. I forgot. I didn't even sign up, and even if I had, I would have blown it on day 2. DAY 2. Gads.

No word yet from the hemotologist (or however you spell that). I finally looked him up and called him on Friday, but it was late and they had already gone home for the day. Whoever it was who answered the phone assured me that no one would be calling us to set up an appointment until Kiki's records arrived in their office. So now we wait.

I'm at least calmer. Deceptively calm, it turns out, because I had occasion to drink last night, got a little past buzzed, and started bawwwwwwwwwwling. No one likes a snotty drunk, I'll tell you what. Least of all me. My loving husband, who is always insistent on being the last to leave a party, actually dragged me out early even though I kept telling him I was FIIIIIINE, I'll stop cryyyying, look I've STOOOPPED already ..... waaaaaaaah!

Yes I went partying the weekend after getting scary news about my baby and yes I cried. Unbelievable.

But Kiki got quality time with her grandparents, and nobody loves that more than Kiki and her grandparents. Honestly, we show up, we barely get a glance and a Hi, and the baby is swoooooped up and I'm pretty sure they don't put her down, unless it's to change her diaper. She naps in their arms. I know this because I've caught them.

And she's still fine, no signs of a cold, except she still has the cough. I'm going to need to get a new humidifier tomorrow; I'm sure it will help.

And that is pretty much all the news worth reporting from this household. Today, anyway.

Thursday, November 1, 2007


Isn't it appropriate that right near Halloween we get news about blooooooood? Hmm?

Okay, actually, more appropriate that I took Kiki in for a blood test on Halloween? Poor girl was so tired from me running us around all day that she had a meltdown just as we went in for them to take her blood AND I forgot her binkie in the car BECAUSE I'm such a newbie mom I make myself ill sometimes.

Results today. You know it's never good when the doctor herself makes the phone call. Her lymphocytes are high. I'm not sure what that means, but immediately what it means is that the assumption is is that she'll have have a helluva time fighting off any infection should she contract one. So the doctor is making an appointment for her in Kansas City with a pediatric hematologist, and in the meantime, I'm taking her temperature like an obsessed madwoman to make sure she doesn't run any fevers.

At least we are being proactive. And if there's anything a hematologist can do, it will be done. Just waiting now to find out when our trip to KC will take place. I've never been to KC, you know. I'm kind of excited. I've heard good things. Maybe we can con the grandparents into tagging along, and then leave them in the motel with the bebe while we go bar hopping. Score!

(she types as she tries not to break down crying for the seven hundredth time today).

I'm really trying not to meltdown about this. I'm trying. Yesterday she was evaluated by DCO to determine what stages she's at, and she's 2 months behind in communication skills and 1 month behind in socialization skills. Which had me crying off and on all day while I ran errands. And now... well.


You know, if I can't handle these little setbacks and these potential setbacks, how am I going to handle the big ones to come? Am I going to require a straightjacket until I come to terms with her not walking until she's 3? How the hell am I supposed to be any use at all as a mother to her if I can't get it together and fucking step up already without mewling and sniffling like a great big blubbering neverending pity party?

Obviously I need therapy. Obviously I am already on top of that. I have an appointment next week which may be pre-empted by a trip to KC. Did I mention that I'm actually looking forward to going to KC?

Wednesday, October 31, 2007


thought there might be days like this
feared it because I am not ...

know me know how I gloss and deny and disassociate
would I love her would I want her would I ...

she looks up at me with eyes blue like a deep lagoon
flecked with white like foam on the waves
like poetry even though I know I know the white flecks
are not just beautiful
they are there because she has ...

and I love her more than I ever thought was possible
and I yearn for her and want for her more than I ever wanted for myself
and she deserves everything everything all that there is
but all I have to give is ...

she's still so young so small so full of opportunity and potential
I say this I feel this I know this
but then there are days like this when ...

desperate to share her to take her out to show her off
so many people stop to play with her coo at her bask in her blue and white eyes
beautiful they call her and I want to ...

I let as many people hold her as seem to want to
love on her hold her and watch and absorb and keep in my soul
because one day one day not too far off
most people will glance and glance away quickly
will no longer see the beautiful baby
they will only see ...

she looks deep into me with eyes blue like a deep lagoon
flecked with white like foam on the waves
and if she could speak I think she might say ...

most days I am fearless and doubtless and I think
she is not just my blessing but a blessing to the world
and the lucky ones are the ones who take the time to know her
to hold her hand and let her guide them down her path
they are the lucky ones who will let her teach them how ...

but then there are days like this when I am reminded
not of her imperfections but of my own
when she is days weeks months behind how does that translate
into useless hours minutes seconds I spent ...

if I'm not being her mother her teacher her guide
from dawn to dawn every heartbeat every breath
how much farther will she fall behind how much more will she ...

she focusses on me with eyes blue like a deep lagoon
flecked with white like foam on the waves
and if she could speak I hope she might say ...

Wednesday, October 24, 2007

Happy Birthday, Grandma

Today is Grandma's birthday. She would have been 93 today.

I'd always dreamed of watching Grandma hold, love, and play with my baby. I don't in the least bit regret waiting for Kiki to come into my life; and I can't regret that Grandma died when she was ready to go; but I can't help but be a little sad today, holding my baby girl, and knowing Grandma never knew her.

I rocked her to sleep tonight telling her about her Grandma Margaret. I believe Grandma is looking over her, like she watched over me as a child. I believe Grandma knows her, somehow, even if I'm not able to witness it as I would like to. I feel her near, sometimes, when Kiki cuddles close to me, when she smiles up at me.

A part of me hoped Kiki would have Grandma's eyes, as if somehow that would mean that she is Grandma reincarnated, the two of them merged together in some way that keeps them both in my life forever. But Kiki's eyes remain blue, dark blue, and they are so beautiful, and so uniquely her.

I don't have any recollection of Grandma's favorite song, but I know she played this often after her sister died. It was Aunt Agnes's favorite song, and I think that somehow made it Grandma's as well. I feel both of them sometimes, nearby, loving her. I know they are checking in.

Happy Birthday, Grandma. I miss you so much.

Tuesday, October 23, 2007

Prepare yourselves...

Something scary and something incredibly adorable.

Yes, the scary is me.

She seems singularly unimpressed with being a dronkey. I think it's because she hasn't yet seen any of the Shreks. She will change her mind.

I know it's not Halloween yet. I couldn't wait. I love to dress her up! And she's very patient about it, bless her heart.

Thursday, October 18, 2007


So I have a grand total of two songs I sing regularly to Kiki. These have already become routine and plant themselves deep in her subconscious for the entirety of her life.

Or so is my master plan! muhahahahahaha!

The first song is a song I made up. It's her wake-up song. I will relate the words to you because I am not ashamed. I know it's goofy, and it's not creative, and I don't care because it makes HER smile a LOT. It goes like this:

Good morning, Kiki
Good morning, dear
I am so happy
To have you near.

You are the darling
Who I adore
And I will love you
Forever more.

I don't know what the melody is from; I will not pretend I made the melody up myself. I'm afraid it's from something creepy, because that's how I'm wired.

Case in point.

The other song I sing her every night when she goes to sleep or when I'm trying to soothe her. It's Hush, Little Baby. Which I love, mainly because it's the only lullabye I know from beginning to end (I do not count Rockabye Baby or Twinkle Twinkle and for no good reason either, so don't try to logic me.)


There is a reason I remember it from beginning to end. It is not a sentimental reason. It is a CREEPY reason.

It's because of Evil Dead 2.

And every time I sing it, even though it's supposed to be a lullabye/soother, all I can think of is a naked corpse doing a stop-action ballet with her decapitated head and a creepy ghoulish thing in a cellar.

And yet? I do not stop singing her this song. How did I ever pass the parent test and get entrusted with this child?

Wednesday, October 17, 2007

6-Month Visit

So we went to the doc's today. She's in the 50th percentile for length, 70th for weight, and 70th for head circumference. Her growth has charted perfectly which supposedly makes me a Great Mom. Go me! I find it hard to believe that I should receive more credit than her genes, but who's arguing? Great Mom! Go me!

She had fallen asleep while we were waiting for the doctor (truth be told, so did Mama) because I'd been running all over town all morning before the appointment so she'd had zero napping. It usually takes her a little while to get over the groggy, so the doc was giggling a little at her while she tried to focus on the doc's face. You could almost read the words going through her head. "Okay. I'm not going to freak because Mom's right there. But you? I know you. There's something about you that I should remember. I can't quite place it. Let me think here."

She's ready for teething biscuits. Doc said we can expect her to be popping out a tooth or two in the next couple of weeks. Joy! Which means that now she's on vitamins with fluoride (there's no fluoride in our drinking water, and our city drinking water is pure enough to use for mixing formula straight out of the tap.)

Then the doc asks, "How's her cough?"

I replied, "I haven't heard her cough in days."

Cue the baby. *hack* *hack* *hack*

Well, I had that Great Mom trophy in my hands for almost 5 minutes that time. One day it will last long enough to sit on a shelf.

Yes, she's still croupy. Yes, the doc still wants me to monitor it in case it gets worse. But she says it happens sometimes when they're about to teethe, so maybe it will go away soon. I hope. Poor darling.

And that blood test that I thought was normal? Not so much. Her white blood cells, it turns out, are slightly misshapen. Not enough to cause alarm, but enough to make a medical note. So I will not worry about it; there's no point. No harm, no foul. If it becomes a problem later, I'll deal with it then. In the meantime, it means regular blood tests for the bebe; but starting at a year, she'll need to do thyroid panels anyway, so the doc figures she'll just scrunch the two together.

And then came the shots. The nurse is very quick with them. But Kiki felt 'em this time, and wailed. For 5 sobs, more or less, then went back to normal. I think she only wailed to begin with because she hadn't napped much and was a little grumpy.

She's working up a bigger tantrum in her playpen right now, in between zerberts, trying to keep herself awake.

Silly pumpkin. Well, I must see to the child. Oh, look! I finally got a pic of her laughing!! Ok, yes, it's a laugh on the verge of melting down into a cry, but it's as close as I could get!

Thursday, October 11, 2007

And again

In a lot of ways, I've come to peace with Kiki's Downs. I'm not sure how to explain how exactly. This will probably sound odd when spoken aloud.

When I found out about her having Downs, I had three major blows to the gut over it. One was knowing that the world is full of people like me who are uncomfortable around others with disabilities; two was knowing she would never be the brilliant prep school prodigy of my dreams; and the third was knowing that statistically speaking, I will more than likely outlive her.

The funny thing is what finally snapped me out of the pity spiral. Obviously, just spending time with her, I've fallen so in love with her that I -- I can't even express the depth of it. But for a long time, there would times I would hold her while she was sleeping, and I'd feel this overwhelming love for her, and then this extraordinary sadness, and I would just cry.

I struggled with all three, trying to figure out a way to conquer them all. And one day, while I was feeling sorry for myself that I would some day lose her, I thought, "Well, what's the alternative?" There's only one. Either she dies before I do; or I die before she does.

My response to this epiphany was immediate, matter-of-fact, and finally shook some good solid sense into me. It is simply NOT acceptable for me to die before her. I will not abandon her. It will not happen.

This somehow put everything else into perspective, like a giant mess of machinery that suddenly up and clicked together and started running smoothly.

It doesn't matter if the rest of the world out there doesn't know how to behave themselves around her. I'm not their mother. I'm her mother. I will protect her with a buffer of close friends and family who love her unconditionally, as I do, until she grows into her own and expands her buffer. The rest is incidental.

All I care about, all that is important, is that she be happy and content, confident in her own skin, and self-reliant to whatever extent makes her feel strong and capable. In the end, it all boils down to, if she is well-rounded and happy, then I have nothing to be unhappy about.

That said, I have been remarkably positive lately. I haven't cried while holding her in over a month. I actually for the first time feel up to any challenge that comes up.

And that said, I still get my panties in a twist over things that I refuse to accept. People still say things to me that absolutely boggle me, and they say them with the intent to be supportive which absolutely kills me. One person, who works in an institution environment with people who have Downs, who has an uncle with Downs, was telling me about the people she works with. She mentioned a 12-year-old girl, who she called high-functioning, who was able to dress herself; but she was *high functioning*, with emphasis, which implied to me that that was a high bar for me to set for Kiki.

And today someone who has worked with austistic and Downs children in the past offered to babysit sometime, making sure to point out her experience with Downs children, and then backed off that to apologetically point out that she's aware at Kiki's age there's no difference in care between her and any other baby. But then went on to add that the milestone lapses and special care requirements will come later, in probably a year or so.

I just don't get it, really. On one hand, I want to think, these aren't ignorant people; these are people with experience in this arena, while I am completely and utterly the newbie.

And yet, I can't stop thinking that if I lower the bar on her, it will cripple her. I continuously find and read things that foster hope in me that she has the potential for greater things than just being able to brush her teeth without assistance. I feel like not having that hope just means giving up on her, and I cannot do that.

And that is all.

Tuesday, October 9, 2007


I am giddy about the upcoming holidays because they will be Kiki's first exposure to 'em. The first Halloween I get to dress her up! (And probably the last Halloween I'll get to pick a costume for her.)

So I started hunting online for costume ideas (because I wait until the last minute to do ANYTHING hence becoming a first-time mom at the ripe age of 40).

Seeing as she's totally enamored with the zerbert sound, and will amuse herself for hours by zerberting in every direction possible, I thought this was the perfect costume for her. Because I am also a Horrible Mom who finds this absolutely hilarious. Kipp pointed out to me though that if I dress her up in it, I run the risk of people being tempted to sit on her.

However, I will most likely relent and go along with the Dronkey costume instead because C & B will absolutely love it.

I found the cutest red Christmas sleeper at WalMart tonight and resisted buying it. If this continues, it's likely I may dress her up as a turkey, Pilgrim, or Indian girl for Thanksgiving.

I do get an inordinate amount of glee out of dressing her up. It's interesting -- when I just dress her in a onesie and take her out, she doesn't get half the attention as if I doll her up in a coordinated outfit and put up her hair.

And I get that babies are inherently unisex in that it's difficult to determine their gender, for the most part, without certain clues. But when I dress her in a pink shirt and jeans with frilly cuffs and put up her hair like Pebbles, wouldn't you think that people wouldn't ask if she was a girl? I mean, granted, I'm thinking of dressing my baby up as a Whoopee Cushion for Halloween, but even I wouldn't dress my baby up for an outing in frilly pink things and bows if she were a boy.

Next time, I shall answer, "No, he's an Executive Transvestite."

Sunday, October 7, 2007

Crap Mom

So in responding to K's comment yesterday, which she began by calling herself a crap mom, something clicked in my brain. She mentioned that Dessa outgrew her Pack n Play bassinet attachment last week; that the weight limit on the thing is 15 lbs.

Click. It has been mentioned before that Dessa and Kiki have the same (or at least strikingly similar) boring brown Pack n Play.

Click. Kiki weighs 16 pounds.

So of course, I race to check the weight limit on the Pack n Play. 15 pounds. Crap. I race into the bedroom to check the weight limit on the bassinet. 15 pounds. Okay. So for the last 2 weeks AT LEAST, I have been putting my daughter's health and welfare on the line and putting her to rest in things that are not designed to hold her weight.

I? Am the crap mom.

So I had to break down last night, and put Kiki in her own room, in her safe crib, for the night. I was very iffy about it. I don't know that I would classify myself as a Family Bed type, really, but I really loved having her so close to me all night long.

So I rocked her while Kipp pulled the bumper off her crib -- no one was sleeping in the crib, and I wanted it to be pretty, so it had the bumper on it, but there was NO WAY I would leave her alone in the crib overnight with that still on it.

As he's working, he began to hum Pomp and Circumstance.

"Shut up," I told him.

"Come on, honey," he said, "this is the biggest milestone possible until she graduates from college."

"Shut up."

"I think we should have a parade. Don't we have balloons or something somewhere?"

"You're not shutting up."

"Okay, okay. We'll save the parade for when she's potty trained."

At which point it became necessary to apologize to Kiki in advance if she woke up in the morning fatherless.

Which reminds me of something funny (because I'm morbid). The other day, I dressed Kiki in a rather loose sleeper. Now, she has short arms (I've mentioned this before), so even in a long sleeve anything that fits her torso, I have to roll the sleeves up so her hands aren't covered.

So, she's napping in this loose sleeper, and her sleeves got unrolled, and somehow in her squirming, she manages to pull one arm completely out of the armhole and into her sleeper, clutched against her chest. I'm not sure exactly how this happened.

All I know is, she's sleeping peacefully one second, and the next second she is screaming bloody murder. I run over to her side, and she looks up at me, one sleeve flopping emptily at her side, and her eyes just wide as saucers, and I swear to God the expression on her face said this word for word, "My arm!!! Mom! I lost my arm!! It was right there when I went to sleep! And then I woke up AND IT WAS GONE!!"

I helped her find it once I stopped laughing my ass off. Because I am nothing if not empathetic.

Oh, I got sidetracked. Sorry. So Kiki slept by herself, in her own room, last night, the only being in the house to sleep alone, mind you, as the dogs got themselves very comfortable in our bed. Which of course made me feel guilty as hell. Here I am, downstairs in bed with my husband and our two dogs, and our itsy bitsy infant daughter is all alone all the way upstairs in an empty room without anybody around at all. Alone. Bereft. Abandoned.

At some point during the night, Kipp took the baby monitor out of my hand and put it on the nightstand. Evidently I had it cranked to the highest setting, and I was clutching it to my head as I slept.

She survived the night. In fact, she slept really well. She woke up at her regular time, and did her regular routine of kicking then vocalizing. No traumatized screams. No uncontrollable wailing and gnashing of tee- -- gums.

And so the growing up goes on. My precious girl.

Friday, October 5, 2007

Her First Cold

It's official. Kiki has her first cold.

I'll have to chalk this up to mother's intution because the kid? Does NOT act sick. She's not running a fever. But last Friday, she had a fever of about 99 degrees -- not alarming -- and the rosiest cheeks you have ever seen. I thought she was wheezing, and maybe having a little difficult breathing. But it's hard to tell with her because she's a snorter (small nose + shallow nose bridge = snorting).

Since then she's had some random bouts of clamminess, and this morning she coughed 6 times. Not productive or anything, just a dry cough. I decided to take her to the doctor's just in case, and sure enough? She has a cold. Not a bad one, but enough to just keep an eye on.

Again -- she does NOT act sick. She's eating, she's sleeping, she's no more fussy than usual, and she's been laughing and smiling more often, so... on one hand, I feel guilty for not taking her in a week ago, and on the other hand, I know there was nothing to do about it anyway, and she's doing fine now.

She's fighting sleep more and more these days. Once she is asleep, she's out, but she'll fight it as long as she can. She's getting close to that 6-month marker where I'd promised Kipp that I'd start putting her in her own room to sleep. I can't do it!! I'm not ready!!!

But last night, after her last feeding, when she started fussing from being so tired and refusing to sleep, I started to put her in her swing, and Kipp said, "Just put her in the bedroom. Put her to bed." I of course took this to mean OUR room, in the bassinet, so that's where I put her, turned the lights out, and five minutes later, she was snoring away. So it looks like bedtime really has to mean actual bed from now on -- starting with the bassinet and working my way upstairs towards the end of next week.

I am the worst proponent of the Back to Sleep program. I always put her down on her back, I do!! And at night, in her bassinet, I put her in a positioner, just in case. But during the day, I just put her down in her Pack n Play, so she can work off some energy, and without fail, she'll end up passing out on her stomach or on her side.

I have photographic evidence of my poor motherhood. Look at this. On her side and WITH a blanket toy to boot. But she looks so peaceful and happy and I check on her a million times a minute to make sure her face isn't covered so... (sigh)

Thursday, October 4, 2007

Big for her britches

As a scopist, I learn something new every day. That's just one of many things I love about my job. Anywho, I learned something about percentiles the other day. I don't know why I never just asked the doctor; I guess I figured I already knew what they were talking about. Never assume.

So, anyway, Kiki has been in the 50th percentile for weight since her first checkup (on the non-Downs chart, mind you). I thought that meant that she was at 50% of average (normal) weight. Ha! It does not mean that. It means that she's smack in the middle of normal. Or she was. At her last weighing at WIC, she was in the 70th percentile which means that out of 100 babies, only 29 would weigh more than she does.

THAT is a hugely different meaning than what I'd been assuming all along. And it explains why when I put her in a 3-6 month size onesie yesterday, the snaps popped open when I picked her up. She's not even 6 months old yet, and she has outgrown everything smaller than 6-9 month size.

It's hard to remember her smaller. But I was looking through her pics, and there's one of her in a NB size onesie -- I know this, because I still have it and I checked -- and she's practically swimming in it. She was so tiny once. And now my arm aches when I carry her for more than 10 minutes. (Which is less a statement on how heavy she is than on how weak I am.)

I have packed up all the clothes she's outgrown (except for a few I'm keeping as keepsakes), and I'm ready to head for a consignment store. Winter is coming, and I have no winter clothes for her. I have one cute cute cute outfit she has never worn and it may be too small for her now (dammit!) but I'm gonna shove her in it sometime this week and get a pic of her in it and take her out in it at least once!

I hate waste.

Sunday, September 30, 2007

New high chair!

And being the overzealous parents we are, we had to choose a high chair with all the bells and whistles. 7 height adjustments. 3 reclining positions. And battery-operated playthings all attached.

Yes, it's not just a high chair! It's an activity center! Which stokes me because I've been *trying* to figure out how to put things within her reach while at the same time getting her to practice sitting up. She has short arms, people. And I need to continue to encourage her to reach for things. She's starting to get pretty good at it though so yay!

Friday, September 28, 2007

Time for a new baby purchase

Tomorrow, I buy a high chair, thanks to Mom (that'd be Grandma to Kiki!) I'm excited! I can't wait for lunch tomorrow. Yay!

Speaking of our latest obsession -- food -- we've pretty much nailed down what she likes to eat. That would be cereal, carrots, and sweet potatoes. The list that makes her make faces: bananas, apples, peaches, pears, squash. The list that makes her purse her lips and refuse to open: green beans and peas. Just like mama; a carb freak who hates fruit.

So I figure I'll indulge her betacarotene cravings and turn her orange for Halloween.

Speaking of which, we were at Target comparison shopping for high chairs and they have the cutest sleeper-type costumes. I favor the Tigger; Kipp's angling for the pink hamster. I'm not sure why. He likes the monkey best, but it wasn't in Kiki's size... well, actually, therein lies the true problem. We couldn't figure out if the 3m was too small and the 6m was too big -- she's like somewhere in the middle. And Halloween is like 5 weeks away, which is astronomically far away in terms of baby growth. So we had to put off the actual buying until, I don't know, October 30th at midnight or something.

We're planning on taking the kids to the zoo for Halloween. We did that last year -- or was it the year before? I'm not sure which, but it was good fun. Crazy full of people, but good fun. You know, the town I live in isn't huge, especially not by Silicon Valley standards, but I get all nostalgic when every denizen within a 50 mile radius converges on one location at one time. It reminds me of rush hour on 101 and Saturday at noon at Costco, all at the same time.

I thought winter was descending there for a bit, but it's warmed up again. Dammit. I'm tired of having to pay someone to mow the lawn. I want the cold back! I want the lawn to go to sleeeeeeep already. Stupid lawn.

Kiki's now slinging a rattle around like a pro. Well, okay, she's a little uncoordinated, and it ends up bash! hitting her in the head bash! mama's glasses bash! her own eye bash! mama's nose... and so on and so on. But I love it. I'm so happy to see her using her arms!! Her PT has been commenting on the laxity of her shoulders. Everything else is strong and active, but her arms and shoulders need some devoted attention.

Well, I'm off to dream about high chairs. Toodles!

Sunday, September 16, 2007

Food Train

I know I'm currently obsessed with my daughter's eating. I can't help it. The doctor says there's no reason to try to force-feed her, considering she's doing as well as she is, and I couldn't if I tried anyway because she's a stubborn little cuss.

But her eating habits vary every damned day. One day she'll be attached fondly to her bottle; the next day it's no more than a slightly annoying chew toy. One day she sucks down 10 ounces at every feeding (except at her food feeding), the next day 8, the next day a reluctant 6. She's like the moon, waxing and waning, except a whole lot louder.

She's still trying foods. Doesn't like applesauce unless it's mixed with cereal. And don't stop the food train a'coming, peoples, 'cause she don't like a-waiting. Now in addition to the GRRRRRRR she does when she's playing, she does an ERRRRRRRRRR when she's ready for her next spoonful. She tried this new communication on her daddy this morning while he was feeding her. You know, it's really hard to keep the food train on track when you can't stop laughing.

I'm planning on buying her a sign language DVD in the next couple of weeks. We'll see if she likes signing.

Wednesday, September 12, 2007

Big Girl Eating

When I decided to start introducing Kiki to solid foods, I was prepared for certain side effects -- specifically constipation. When she made the transition from mostly breast milk to mostly formula (I just .... stopped producing. Go figure.), she got constipated, so I figured adding solid foods would do pretty much the same thing.

And it has. We've done the prune juice -- diluted with half water and 1 oz given 2ce a day. This works somewhat except that she's not crazy about prune juice (who can blame her?) We've had to resort to glycerin suppositories on occasion. But what I've found actually seems to work on a regular basis -- no pun intended -- is corn syrup in every bottle.

And no I'm not being a paranoid mom who can't tell the difference between constipation and solid poop. Yes, I know breastfed babies do the soft pooping that is nothing like the firmer pooping of the formula-fed baby. And I know that all babies strain when they poop and it doesn't mean they're constipated. But when she's straining so hard she turns purple AND she starts screaming until it's come out AND she's passing a little blood AND it's the consistency (I shit you not -- again no pun intended) of modelling clay -- well, honey, your baby is constipated.

Okay, anyway, we have it under control.

But we have this OTHER side effect of introducing solid foods that I honestly did NOT expect AT ALL. I mean, it's not like I'm feeding her a TON of solid food. I'm INTRODUCING, which means, you know, a tablespoon of some kind of food 4 days in a row, until I introduce a different food. So again, just one tablespoon a day of food.

I think I went awry when I then decided to add a nighttime treat of rice cereal, so now she's getting 2 tablespoons of solid food day, two different times a day.

In any case, the upshot is that Kiki loves to eat big girl food. She's very good at it. She opens her mouth like a little bird after every swallow. She bounces around excitedly while she's eating. She claps her hands. She feels at her mouth, plays a little with the food.

In other words, she loves to eat. Just like I'd thought she would.

And she has decided she hates her bottle. Which I never in a million years expected.

I mean not HATE hate, but she could do without, you know? I'm glad I don't breastfeed, because she's taken to chewing on the nipple. And then she takes a mouthful of formula and spits it out like a fountain and grins. She pushes away the bottle after a couple of ounces, then fusses because it's gone, then just plays with the nipple when it's back in her mouth.

And this happens at every feeding, mind you, not just after I've given her food. If she decides to wean herself in the next couple of months, I will just kick myself until she's 16 for just HAVING to introduce food so damned early.

Update: she dislikes bananas and hates green beans. But she luuuurrrrrves sweet potatoes, carrots, and squash. Next up: apples! (I know it should be peas. I want it to be peas. But Kipp wants her to try the cereal with apple in it and I won't let her try it until I introduce apples, and he's very impatient with the whole introduction thing.)

Tuesday, August 28, 2007


In my never-ending quest for inspiration on the web. First, earlier this year, my stepmom told me about the Oprah Valentine's Day show that featured the young Down Syndrome couple in love. I finally decided to go looking for 'em on the web.

First I found this article, which made me laugh and cry, because EXACTLY! I have obsessed here and there about sex and Kiki. Okay, that's obviously at least 18 years down the line, but that's my point. It's 18 years down the line! As opposed to -- yeah, right. As if. I love this article.

The one thing that bothered me was when she realized this (which actually occurred to me the very first time I heard of Sujeet and Carrie because I? Am a pessimist):

The fact that these two are married is fodder for Oprah. That means this kind of thing never happens. Shit. It’s a sideshow. Carrie and Sujeet’s happily-ever-after is an aberration. An episode of Oprah; a feature in Time magazine.

I searched on, actually hoping to find the video of Oprah's interview, and found this article on Sepia Mutiny. And they point out in their article -- which, by the way, I note that MOST news articles tend NOT to mention -- that things are continuously on the upswing for people with Downs.

Carrie and Sujeet are the first generation of DS individuals to be healthy and functional enough to consider marrying. They’ve benefited from full social assimilation, new therapies, and close medical attention that mitigates the health complications of DS:

Do you know what that means? Do you know what that means? That means if I stay abreast of all the newest treatments and therapies for Kiki, then she has every chance in the world of being in the next generation of DS adults who are fully socialized and where "high-functioning" won't mean "able to dress herself" but actually "able to function normally."

And finally I found Sujeet's site. Well, actually that link goes to his proposal page. It's incredibly romantic -- I mean, it would be if I didn't have this continuing hangup that the Phantom of the Opera is creepy as hell and not romantic in the least itsy teensy little bit. But I will overlook that for the romanticism of the moment.

I don't overlook things like that for just anybody.

In the meantime, should I be doing other things besides encouraging Kiki to stick her toes in her mouth? (It makes her play with her feet; don't be judgmental.)

Sunday, August 26, 2007

Oh! The Screaming

Okay, I confess to a certain amount of smugness that Kiki knows her mommy and prefers being held by her mommy. I admit that even from the beginning, if anyone was holding her when she began to fuss, even if that someone was Kipp and I was supposed to be napping or working 2 rooms away, I'd suddenly be hovering, ready to take the baby and comfort her.

So now maybe it's my fault that she no longer just fusses when she's done being held by someone other than mommy. Because now, even if she's all smiles to begin with, if Kiki knows I'm nearby, and she's being held by someone, after a few minutes or so, she will suddenly scrunch up her cute little face and SCREAAAAAAAAAAM and WAAAAAAAIIIILLLL and yes, even hold her breath.

It's getting bad. Just tonight, I was cuddling her, and needed to get up to do something, so I handed her to Kipp to get some cuddle time. She was all smiles and happy, and he was bouncing her on his chest, and kissing her, just like I do, and he gave her this long smooch on her cheek, and suddenly she just lost it. She did the silent wail thing where she was just holding her breath, and I'm all frantically telling Kipp, "Blow on her! Blow on her!" So he blows in her face, and she catches her breath, and she just screams and screams....

And Mommy scooped her up, and comforted her until she stopped wailing. It was almost like she was in actual physical pain, but we couldn't figure out what it was, and then she just soothed off just fine, so it wasn't a lasting internal pain or anything. I figure Kipp must've poked her with a whisker or something. Or she just got over tired. Or she's so completely a Mommy's girl that she just isn't happy unless I'm holding her.

Which -- can't be good, right? I mean I'm not going to pretend I'm completely flattered beyond measure and all but... I never wanted her to be inconsolably bound to me, you know? I can't believe for a minute that that's healthy. I know right now she's an infant, she can't take care of herself, so it makes sense that her parents would be the center of her little universe, but that position should be a shared one that gets bigger and bigger as she gets older, and suddenly at 4 months, it seems like that center has suddenly shrunk to the size of One Mommy.

So I've been trying to search the web for information about this, but nothing so far. I'll keep looking. I'm sure it's a normal and transitional stage, but in the meantime... I feel guiltier than ever if I'm even out of her eyesight.

In other ways, she's just so utterly -- I don't know a single word for it, but she definitely knows what she wants. When she's tired and wants to be cuddled until she sleeps, she does NOT want to be cradled anymore. She wants to be sitting up. Sometimes, she wants to be propped up in such a way that she can stare at my face and play with my lips and nose, and other times, she wants to lie her back against my chest and stare out at the room. Either way, lately this is the only way she will settle down while being cuddled.

We've been watching LOTR on tv this weekend, and it strikes me was I watch the end (again) how I've always believed the true hero of the whole piece is always Sam, from beginning to end. He's also the most unchanged character, from beginning to end, which makes him slightly booooring.

And everybody laughs too much at the end. Ho ho ho ho ha ha ha ha ho ho... Ya'll are faking it. I can tell a fake laugh ANYWHERE. Goobs. If I were in their place, I'd just want to drink. A LOT. Give me a bed and a keg, dammit.

Sam and Frodo are sooooo special friends, if you know what I mean. It's guy love.

Friday, August 24, 2007

Wouldn't you know it?

So I got all excited about Kiki eating solid food, right? And she's doing fabulously at it, by the way. She's still eating cereal only, and only a tablespoon of it, once a day. I mean, introducing foods this early is meant only as supplemental, not any sort of weaning or anything.

Anyway, so I go out and google baby food recipes, and I find a promising site with lists and lists of foods, from exotic to everyday, and then as I go deeper, it begins to admonish me, harshly, for not waiting until Kiki was 6 months old to introduce solids.

Well, dammit. Can I do nothing right?

I'm monitoring her pretty closely anyway, and she's not reacting badly at all. In fact, I think the newness is intriguing to her. I'm a big fan of keeping her from being bored. And a week later, she's gotten the hang of opening up for each bite, and mushing it around in her mouth, exploring the texture of it. She's even grabbed for the spoon a couple of times, and grabbed some of the mush out of her mouth to play with. A little messy, but exciting to watch.

She's still practicing all her vocalizations. The other day, Kipp "flew" her at me, saying "Here comes Vampire Baby!" and making growling sounds. Kiki evidently took him completely at his word, because now her favorite sound is, "Grrrr! Grrrrrr! GRRRRRRRRR!"

She's starting to explore more with her hands and mouth which means she chews, pinches, and scratches now. All while she's GRRRRRRRing, which makes her a vicious little beastie, all in all.

She seems to have given up on laughing for the most part, at least for now. She still bursts out in happy, all-over-her-face grins, but the actual laugh? Not so much. I know it will come back, though, so I am not obsessing.

Speaking of which. Her blood tests came back normal. Whew! I had these very deep-seated fears her white blood cell count would be up, which could mean -- well, bad things anyway. And luckily all is well, so there's no sense dwelling on it, right? Right!!

And that's all for the week. :) Happy weekend everybody!

Wednesday, August 22, 2007

The 4-month update

Kiki had her 4-month checkup last week, complete with her second round of shots. The doctor was highly pleased with her progress. I think I mentioned this before -- 50th percentile in weight and 70th percentile in length, on the REGULAR chart! Yay!

I always make a list of things I want to ask the doctor, and then, invariably, I leave it at home. At least this time I remembered to pack a blanket in the diaper bag -- the last time I had a naked baby in a chilly room waiting for the doctor and no way to keep her warm except to hold her close. Which is nice, in and of itself, but she's getting more and more wiggly, and doesn't tolerate the snug holding for very long at all. Of course the blanket I did bring this time? Covered in dog hair. Sheesh.

I remembered most of the questions. Can she start solids? Check and YAY! I think she has sleep apnea -- she sometimes pauses in her breathing when she sleeps. The doctor said if she doesn't stop breathing for 20 seconds then it isn't sleep apnea. Which 20 seconds is a looooong time, people. I don't think I can hold my breath for 20 seconds.

I also asked about her circulation. I've noticed that sometimes when she's held, one of her legs or one of her arms will start turning white. This turns out to be normal. But I've also noticed that at times, her hands and feet start turning blue again. So now we must get a blood test. Kiki was born with a high count of red blood cells, but we were told it would go away. The doctor is less concerned at the moment with her red blood cell count; she wants to make sure her white blood cell count is not also high.

And then she got her shots. Took 'em like a trooper, just like the first time. Only this time, she got a fever, and was fussy through Friday.

So we didn't actually try the cereal experiment until Saturday. I wanted her to feel good her first try. And she did fabulously! It's now 5 days later, and she's really getting the hang of NOT pushing the food out of her mouth the second I put it in there. And she's begun opening her mouth for the next spoonful when she's ready for it.

The doctor suggested trying cereal only for 2 weeks, but I don't think I can wait that long. I think Saturday I will make her some squash -- or yams -- or carrots. Color! I want to feed her color!

Both the doctor and the physical therapist are impressed with the improvement of her muscle tone. She can sit now, if she's propped up. And she'd rather sit up than be cradled, and she lets us know in no uncertain terms.

Poor Kipp. He's been noting that Kiki is a Mommy's girl, and I think he's a little grumpy about it. He kind of just assumed she'd be a Daddy's girl. I tell him that she'll go through stages. Right now, she's an infant, and infants tend to know their moms really well. Once she starts to move around and get more independent, she'll more than likely switch loyalties.

But secretly, I'm pretty smug about it. My baby girl prefers me to ANYBODY! muhahahahahaha!

Sunday, August 19, 2007


Okay, I've never been a starstruck kind of person. Sure, I occasionally read a gossip rag. Yeah, I get a certain amount of fun out of trash-talking certain celebrities I'm convinced are utter pricks. And yeah, once when I was in my early 20's, I created a scrapbook of Christian Slater clippings.

Through all of it though, I never had a genuine desire to meet any of these people, you know? I'm not a groupie type. I'm just not.

But I've found an actor I'd actually love to meet. For one, I love Dr. Cox. I just do. And I have no problem differentiating an actor from a role, people. I know John C. McGinley is not Dr. Cox. And if it were just his portrayal of Dr. Cox, and his other roles in other movies, I wouldn't be saying this. It's also because he's got a son who has Down syndrome and he's a Positive Landmark. Read this.

Yeah I've come up with my own terminology. Finding ways to educate myself about Down syndrome and finding ways to ensure she's growing up with every benefit possible is like wandering aimlessly without a map. I've learned over and over again that there are Positive Landmarks, things that boost my spirits, give me hope, and keep me motivated; and then there are Negative Landmarks, things that crush me, and make want to just have a sit and forget about the trailblazing altogether.

For example. Negative Landmark: A couple of weekends ago we were talking with a couple of friends who work with disabled people. I think they work in an institution of sorts. Anyway, she raved about how loving this one man with Down syndrome was, and how she loved to tickle him and make him giggle. He won't go anywhere without someone taking his hand and leading him there. It was obvious she was extremely fond of him, and she meant to be inspirational, because her point was, he was so full of love and joy, nothing else mattered. But, you know, it does matter. I'm sorry. Maybe it shouldn't. But it does. And also she mentioned a high-functioning girl there who's greatest accomplishment? Dressing herself every day at the age of 14.

And then? Positive Landmark: A German glossy magazine written exclusively by people with Down syndrome.,,1423154,00.html?maca=en-rss_english_top-388-rdf

My favorite quote from this article:

While attending genetics conference, she came upon a text about Robin Hood, hand written on one sheet of paper, by a man with Down syndrome. "He had summed up the whole story in a few short sentences. I was fascinated. How he could write so beautifully, so short yet so exciting," de Braganca said. "The writing of (people with Down syndrome) is different. It is short and always to the point, and they have an unusual point of view."

Most new moms are obsessed with their babies; it's natural. It occured to me, as I was writing this entry, that I'm obsessing more about my baby's condition than I am about my baby herself. That's true sometimes -- it's certainly true when I sit down to write.

But moment to moment -- she just amazes me. Her newest thing is to kick her legs up and down so that her Pack n Play shakes. She'll ride the shake, and when it stops, she starts kicking again to get it started. I'm certain she's trying to say "I love you", even though it comes out "Ah ohb oo", it's exactly the right amount of syllables, and exactly the right mouth shapes.

She's so much more interactive than she was a few weeks ago, even. She's reaching for everything, and when she touches things, she squeezes and strokes them. She actually watches the dogs, and looks for them when she's in her bouncy chair. She recognizes our voices, and our touch, and she's developping a definite preference for exactly how warm she likes her bottle.

And she's so beautfiul. The first thing everyone notices about her, besides her head of hair, are her lips. She's got perfectly defined lips that look like a little heart. Kipp calls them her Angelina Jolie lips, although the bottom lip is not quite that full. When she's about to cry, she sticks her lower lip allll the way out.

She's sleeping now. I love watching her sleep almost as much as I love watching her kick and listening to her chatter on and on. She's my perfect little love.

Friday, August 17, 2007

Four Months and Counting

Okay, yes, I dropped off the face of the earth. I'm back.

It's been stressful around here the last few weeks. Don't want to go into any details, especially since there is now a light at the end of the tunnel, and we're pretty sure this time it isn't a train.

Kiki's 4 months old now! I know, I need a 4-month pic of her, which I will take this weekend during her -- TADA!!! -- first solid meal! Yay!!! I cannot WAIT. We're all prepared and everything. Spoons, bowls with lids, cereal. Kipp even went and got some Level 1 fruits and such.

The doctor, though, told me to skip the Level 1's altogether, because they're too runny. Still, I'll feed 'em to her. Not right away... 2 weeks of cereal once a day, then start introducing new foods for 4-5 days at a time.

I explain this to Kipp, who only got 1 container of about 3 different fruits (not to mention an Apple flavored rice cereal in addition to the regular rice cereal), and he gave me a blank look. "You remember," I said, patiently, "slow introductions of food?"

"We never did that with C & B," he replied.


I explained we definitely had to with Kiki, since I myself have food allergies. This also took him by surprise. We've been married almost 2 years now, and he didn't know I had food allergies. Well, they're not severe, and it never came up.


She had her 4-month shots yesterday, and the poor thing is miserable and feverish today. We've been giving her infant Tylenol, which is just basically knocking her out, and she hates to sleep this much, but there's not much else we can do for her. Even just cuddling her makes her start fussing and screaming after a little while.

She's 14 pounds and 24 inches now, which puts her at the 70th percentile for length and 50th percentile for weight -- on the regular chart!!! Yay! Again, this child amazes me. She's just bound and determined to be a normal baby. That's my girl!

And bless GoddessKristin who wrote this to me this week: "You know, my aunt is a special education teacher and she told me that a lot of her students with Downs are voracious readers. Since you'd written in your blog that you wondered about Kiki's reading I thought I'd pass that on."

K, you will never know how much you brightened my week with that. :)

OH! I almost forgot to relate this week's cute story. Today, I had Kiki in her bouncy chair, and left the room to get something. When I came back in, Sugar was standing right next to her. Kiki was holding her hand up to her, and staring at her while Sugar licked her hand. Sugar leaned in to kiss her nose, and Kiki started petting the underside of Sugar's chin, then started grabbing at Sugar's tags.

One of those moments where I definitely wished I had a video camera surgically attached to my forehead so I could keep those memories forever.

Monday, July 30, 2007

I'm a Great Big Sap

Living in the midwest + being a new mom = me about to buy my first country CD. Run for the hills! Sign of the apocalypse!!

But can you blame me? Keep from crying IF YOU CAN!!

Sunday, July 29, 2007

Not Negative All the Time

I honestly don't focus all my energy on negative thoughts. And when I feel low, a little baby one-on-one always seems to put things in perspective.

She's 3 and a half months old now! She's awake more often, more tied to a schedule, and has just about the sunniest disposition I've ever seen in a baby. And even though I've been advised not to, I still check her milestone accomplishment against the norm, and you know what? To my untrained eye, she's developping pretty normally. So far she:

1. Smiles and grins in response to familiar faces and activities she enjoys, like bouncing.

2. When on her tummy, holds her head up 45 degrees, and sometimes 90 degrees.

3. Brings her hands together on her chest, and also brings her hands up to her mouth.

4. Has begun to notice her feet.

5. Will grasp a toy if placed in her hand, and hold onto it for 10 seconds, even waving it around before releasing it.

6. Rolls from her back to her tummy without assistance, and from her tummy to her back with assistance.

7. Has begun to suck her thumb.

8. Laughs -- not very often, and I think it takes her by surprise as much as it does us when it happens.

9. Gurgles and coos to herself and to us.

10. Attempts to mimic our facial expressions and noises.

So I've started trying baby sign with her. Before I give her a bottle, I make the sign for food. I figure with enough repetition, she may have the routine and muscle tone to accomplish this in a month or so. I'm also hoping that by 6 months, she'll be sitting up and taking a little solid food.

I've got these Baby Einstein blocks that I've been trying to interest her in. They've got different textures on each side, and each one is a different color. So far she's fascinated with the textures, but seems otherwise perplexed as how to interact with the things. And her favorite toy is still her stuffed doggie in a blanket. It's become something of a comfort toy for her. We put it on her chest and she immediately lights up, hugs it tight, and starts kissing it. And then she falls asleep, the doggie's head tucked under her chin, one arm clenched tight around its blanket body, and it is truly the most adorable sight ever.

Friday, July 27, 2007


So I experienced my first cold post-baby birth this week. I discovered I am not Super Mommy. This, of course, comes on the heels of already KNOWING I'm not Super Mommy when we came back from our camping trip on Sunday, and my MIL gave me a status report on how she did all her exercises faithfully and even did hours and hours of floor time.

This convinced me that my in-laws are better parents than I am.

And then, when we got Kiki home, and I was cuddling her, I noticed she'd started tongue thrusting. Like a nervous tic or something. Constantly. I pointed it out to Kipp, who said she'd always stuck out her tongue like that. No, no, I said, it's not the same, and later when he was holding her, he realized it, too.

And then at her physical therapy appointment that Monday we learned that her fabulous attention span, which we'd always been proud of, is actually a bad thing. Turns out DS babies are notoriously passive creatures, and the "attention span" thing is just their way of tuning out. Now, luckily, Kiki is also extremely active and easy to engage, so hopefully this is not as terrible as it could be.

We also got B & C on Monday, for another 2 weeks. Money is tight, so food is tight. With 2 growing kids and a diabetic husband, it goes without saying that I let them eat their fill before I eat mine. Only to come to find that caloric intake affects milk production. Ah well, we have formula. It's not a tragedy.

And then on Tuesday, somewhere in the late afternoon, BANG, I developped a 102 degree fever out. Of. Nowhere.

Now when I get sick, I sleep. It's the only way I heal. I sleep, and then I feel better. Only, Hi, I have three kids to take care of. The older ones, thankfully, can pretty much take care of themselves, but Kiki? Not so much.

I had a fever between 102 and 103 up until about 2am today. And during that entire stretch of time it was all I could do to change her diaper and feed her. I forced myself to pump, even though it was all I could do to sit up for that long, because I was convinced that the antibodies I was building against this damned cold would somehow get passed along to her that way. Let's hope I'm right!

In any case, the bottom line is that I didn't cuddle or play with my baby the entire time I was sick. All I did was feed her, change her diaper, and put her back in her playpen. No kisses. No coos. No cuddles. I probably oozed rejection, and this after a weekend away. I've already saddled my child with future therapy, and she's not even 4 months old yet.

I know I'm probably overreacting, but I honestly feel like if I miss any of her exercises, if I let her sleep yet another night on that flattening portion of her skull, if I let her go 5 wakeful minutes without some kind of stimulation, that I'm deducting possibilities from her future. I didn't kiss her today; now if she never learns how to read, it'll be all my fault.

You know, that shouldn't be an outrageous expectation, should it? That someday your child will be able to read?

Gah. Enough of this. I've got to work so I can buy hamburger.

Thursday, July 19, 2007

Another Day of Firsts

So after feeding Kiki, I put her down -- on her back of course -- in her Pack 'n Play to do some stretching. It's kind of a routine. She eats, then cuddles for a little bit until she either a) falls asleep or b) starts to push away and fuss. At that point, it's Pack 'n Play time.

At which point, if she's asleep, she'll wake right up. So asleep or awake, Pack 'n Play time means unrestricted movement, and she lurrrves it.

Until she doesn't. And then it's time for either a) bouncy chair or b) swing. In either place, she'll nod off and sleep deeply until the next feeding. She lets us know which one she wants, too. I'm not crazy. She really DOES.

Okay. Anyway. I put her in the Pack 'n Play. I sit down and do a little work until I hear her fussing LOUDLY. So I go to check on her and not only has she spit up but ---

she's lying face down in it.

The little munchkin turned herself over! SHE TURNED HERSELF ONTO HER BELLY ALL BY HERSELF!

Yay! And yet? Terrified. What if she does it at night, in her bassinet, when I'm fast asleep?? Great, now I'll be checking her a 100 million times a night instead of just the requisite 50 million times.

And a first for me as well today. Without even thinking about it before I did it, I pulled the old Magic Mommy Spit Cleanup on a little dried milk on her face. And then I thought, "Oh! Eww!" And Kiki just rolled her eyes at me.

So I'm facing a Bad Mommy Weekend. The child is only 3 months (and some) old, and we're going camping. Without her. She'll be staying with family -- who, by the way are DYING to get their hands on her -- but she will be without Mommy. For two. Nights. In. A Row.

Everyone tells us we need couple time, away from baby. Rationally, I can see this may be true. And Kipp has already been through the First Baby Syndrome, so he's completely not even on my side about this. MY side being I CANNOT BE SEPARATED FROM BABY AT THIS YOUNG AND VULNERABLE AGE.

I am outvoted. Yes, I know the Mommy vote should actually trump everyone else, but here's a guilty secret. I'm going to enjoy camping. Until I go to bed at night, at which point I expect to have a complete and total meltdown.

So we're going away for a weekend and coincidentally, Kiki is rolling over on her tummy all by herself at the same time. And I won't be there to check her 100 million times a night to make sure she isn't suffocating.

I must be insane.

I better leave a pint of Mommy Spit, just in case.

Wednesday, July 18, 2007

Darker Moments

It's time to write about the stuff I rarely talk about. This post, and others like it, are a big reason why I started blogging again. I need some kind of outlet.

There's a group that meets the 2nd Monday of every month nearby. They're parents of children with Down's. When I first heard about the group, I thought it was sort of group therapy, a place where parents could get together and talk shop about their challenges, their triumphs, and also, you know, be around people they might be able to share their deepest thoughts with and be understood instead of judged.

(It's more of an information sharing club thing though, from what I can tell from their website. I may go anyway.)

I don't know why I have this fear of being judged about how all this -- my friends are far from judgmental and are actually very supportive and loving. There is a common darkness all new mothers share which stems from our deepest insecurities about our qualifications as mothers and also our incredibly unpredictable hormones. I mean, if I confide in another new mother that I wake up 50 million times a night to lean my head over Kiki to make sure she's still breathing, that new mother nods knowingly.

I don't know though that I can say to another mother, "I have this deepseated fear that Kiki will never develop a personality," and get anything more than a shocked and perplexed frown.

We found out that Kiki had Down's when I was still pregnant. I got pregnant when I was 39, and I didn't know at the time that I had a great-uncle with Down's (he died when he was 10 or 11). My doctor mentioned that, due to my age, it was medically suggested that I get genetic screens early in my pregnancy.

I declined at the time. I said it didn't matter to me. Which was a lie. What I was afraid of was if the tests came back positive at that point, I would have a whole other option made available to me that I didn't want to contemplate. To me, at that time, that was the only reason you would get a screen -- if it were positive, then you would terminate, right? Otherwise, what was the point?

So I said I didn't want a screen, because regardless of the results, I wasn't going to terminate. Truth be told, I didn't want the option; I was scared I'd be a chickenshit, and I didn't think I could live with that. Then I half-reconsidered, and said, "Well, maybe it would be good to know, so I could prepare myself."

And my doctor said, "You can't prepare yourself for something like that." So we were in agreement, and I didn't get tested. So we didn't discover Kiki's condition until I was already 22 weeks along, due to some irregular ultrasounds and an eventual amniocentesis.

And here's where we cry bullshit on my doctor. There are some things in life you really can't prepare yourself for. The death of a loved one, for example. But my daughter wasn't dead. She was just about to be born, for crying out loud.

But there is a similar mourning process that occurs when you get news like this. I know it sounds like I'm speaking for everyone, and not just myself, and I admit I'm generalizing. But I don't know how many things I've read now, written for new parents of Down's babies, where the first line goes something like, "It's okay to grieve. "

So I went through the five stages of grief. I think I still do, from time to time.

But every piece of literature is also quick to point out that you can't grieve forever. This isn't a death. This is the birth of a baby. It needs to be a celebration.

Here's everything I "knew" about Down's Syndrome when we first found out about Kiki: they have distinctive facial features, they're retarded, and they don't live very long. Here's how I treated people I recognized with having Down's Syndrome if I saw them in public: I smiled stiffly if they made eye contact, but otherwise I avoided eye contact and pretended they weren't there.

Now, I like to think of myself as an enlightened, educated, and empathetic woman. I obviously am not, but I like to think of myself that way. What scared me most about my ignorance, when faced with the reality that is Kiki, is that I know I am not alone in my ignorance and my behavior. My daughter was going to be born into and live out her life in a world full of people like me.

The best cure for ignorance is education. At first I was torn between an absolute need to know every little nitty gritty thing about Down's Syndrome and the utter fear that what I'd learn would be worse than what I already knew (which was, as I said before, nada.) I think I stewed in my juices for at least a week before Kipp convinced me to start talking about it to friends.

But what could I, in all honesty, say about it? On one hand, I was afraid of becoming the object of pity. On the other hand, I was afraid I would be lectured for being a bigot. I didn't see any win-win situation facing me at all.

I have good friends, though. No one judged me for my breakdown. They tried to comfort me. And I felt even uglier about that because they one main thing so many of 'em used to comfort me was to point out that people with Down's syndrome are sooo loving and affectionate, and all I could think was...

I know it sounds ungracious. It IS ungracious. Everyone wants loving children, right? But all I could think, all while I was smiling and nodding and pretending to count my blessings was, "I have two dogs who are affectionate even to the point that they'll run up to absolute strangers and love on them. I don't want another dog. I want a daughter." In one of my darker moments, while watching the dogs run around outside, I actually even said, out loud to no one, "Well, at least I can be relatively certain she won't eat her own shit."

These are not motherly thoughts.

I didn't know what I wanted in response to the knowledge of Kiki's condition. I honestly didn't even know for certain what it was specifically that killed me so much about it. Then one day, it dawned on me.

It wasn't a spontaneous epiphany by any means. I'd already overcome my fear of education, had perused all kinds of internet sites, bought 3 books to assist me in helping her early development, as well as general knowledge books to gain some kind of understanding of what I was facing (I'll post a bibliography in the next day or so.) I wasn't getting much comfort from any of them, interestingly enough, but it was galvanizing me with a sense of purpose and motivation to face challenges head-on.

What started the real epiphany was this. We were telling our friends a few at a time, mostly because after a while, I didn't even want to air it anymore. Anyway, I told one friend who happened to work at DCO (which is the local clinic where they provide therapy and daycare for children with disabilities.

She reacted with pure and absolute glee about it, which in turn made me feel slightly giddy. I asked her about her experiences with working with children with Down's, and she started with the usual, "They're so affectionate," and my glee absolutely ended, and I began to tune her out until she added, "They can also be the most stubborn little brats. And a few of my Down's children can't be trusted around open doors because they run!" And that? Made me giddy again.

And the second drop in the epiphany bucked. One day Kipp decided to tell another one of our friends about Kiki's condition. He opened it up with, "There's something I want to tell you about our daughter."

She reacted in alarm, because Kipp is never serious, and for once he was -- serious. He told her Kiki had Down's and she stared at him for a moment as if waiting for the other shoe to drop, and when it didn't come, she responded, "That's it? I thought it was something serious!"

I fell in love with that woman instantaneously. And that's when it dawned on me, why the whole "they're so affectionate" thing bugged me. It wasn't just that it drew on my fears that my daughter was never going to be more socially developped than a dog, it was that it was offered as a consolation prize. It's like it was the only positive thing anyone could think of to say about the situation.

And this is what made me start thinking about why her condition depressed me so badly, why there is a grieving process at all when parents learn their babies have Down's.

I can't speak for others, but I can speak for myself. I grieved because something did die. Not my baby, but my dreams for my baby. I've spent my whole life dreaming about a wide open future for my future children, and suddenly I felt like the universe had told me in no uncertain terms, "Curb your expectations, woman. There are limits now. Now there are things that will never happen, whether you dream 'em or not."

I mean, rationally I knew that I could never control my daughter's future. But there's a subtle yet jarring difference between knowing that, for example, your daughter may not ever want to become president despite your own desires and knowing that that door -- and many, many other doors -- are absolutely and irrevocably closed to her, and without any choice being made by her whatsoever.

I've begun to fear now that she'll always feel like a disappointment to me. This breaks my heart. I always felt that way growing up -- a disappointment to my father. The last thing I ever want to do is revisit that on Kiki.

But on the other hand, I feel resistant to lowering my expectations. That feels like a cop-out. Why shouldn't I still want a rich and fulfilling life for my daughter? She's not unworthy of that.

So I began to take stock of my expectations, trying to drill down to what was most important, and toss away what was simply frivolous prideful things. I've always dreamed of having a bright, inquisitive Honor's Roll child with whom I could have deep, meaningful theologic, philosophic, and political conversations with. Okay, well, encouraging any person to be bright and inquisitive can't be a bad thing. Honor's Roll -- well, I've come to learn that Kiki can and WILL be going to school with kids her own age, starting at 5 in kindergarten. Well, if she can attend a normal school, why couldn't she be on Honor Roll? Her condition doesn't guarantee stupidity, just retardation -- which means she'll be slower to catch on, but doesn't mean she'll be uncapable of catching on. So it'll be more challenging for her, and for us to help her, but doesn't that, in the end, mean the rewards will be that much sweeter?

Maybe it sounds like I'm just rationalizing, and grasping at straws. But when I was in the hospital, one of the nurses made it a point to introduce herself to me. She had a 17-year-old daughter with Down's. She'll be graduating next year. She's been fully integrated into the school system since she was in kindergarten, and because her schoolmates have known her since they were so young, she's always been fully accepted by them. She even has a boyfriend.

Another case in point. My brother-in-law was telling me that one of my niece's volleyball teammates has Down's, and that she's a strong competitor and a great player.

And on the NDSS site, they offer scholarships for people with Down's who are going on to secondary education. College!

The thing is, expectations are changing for people with Down's. More and more doors are opening. There is hope.

I guess that is what I was missing at first. And now I'm gathering more and more of it all the time. These days, not just from what I read and what I hear, but from what I see every minute of every day, in the bright, inquisitive blue eyes of my daughter, and the fact that she does something new and amazing every single day.

The real lesson that I'm taking away from this is that all the adaption I've had to make to this upheaval was something very basic: savor every moment. Don't think so much about the future that you forget to enjoy every miracle along the way. For me, the one who's always been obsessed with plans and schedules, this is a Very Big Epiphany. And for once, scary in a good way.

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.

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