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.

Tuesday, July 17, 2007

The Best Medicine

She laughed for the first time today! Three times! I tried to have her demonstrate her new ability to her daddy when he got home from work, but she resisted my best efforts. She gave us great big grins, but held back on the chuckling, as if to say, "I am not your trained monkey!"

I need to have a video camera permanently attached to my forehead, like a third eye. That way, I wouldn't miss any moments that absolutely require commitment to film. Grrr.

I really want her to start giggling on command so I can use the cuteness of it to my advantage. Say, to lure Mom to the midwest. Things like that.

I've been trying to remember to read her Good Night Moon every night, but I haven't been very good at it. I've also tried telling her fairy tales and discovering that I can't for the life of me remember what happens in Sleeping Beauty, Cinderella, and Snow White after "Once upon a time" and before "They lived happily ever after." I've had more success with Rapunzel, though I'm sure I've butchered it beyond recognition.

No, I'm not sure. I know. Here's how my version of Rapunzel went:

Once upon a time in a land far far away there was a princess who lived in a very, very tall tower without any doors or windows. No, wait. There was one door, because the witch had to get in. Right, there was an evil witch who had locked the princess in the tower. No, wait, the witch got in another way. Right, the hair.

Okay, the princess had really, really long hair, and whenever the witch wanted into the tower, she would stand at the bottom and say, "Rapunzel, Rapunzel, let down your hair!"

Okay, so there was no door. And no windows, except the one at the top. And I'm guessing no stairs either. Just the one window and the long hair. Anyway, the witch would climb up her hair, and then I guess they'd have tea or something. And then she'd say, "Rapunzel, Rapunzel, let down your hair." And Rapunzel would, and the witch would shimmy down her hair, and go home.

Or -- wait. Did she live in the tower, too? No, she didn't. Right. She didn't. Rapunzel did.

Okay. Moving on. Tower, evil witch, princess with outrageously long hair and evidently a scalp made of iron. So what am I missing? Right, the prince. Okay one day this prince goes hunting in a nearby forest, and he gets separated from his hunting party, and he happens upon the tall, tall tower.

He sees Rapunzel sitting by the window and immediately falls in love with her. He's about to go up to the tower when he sees the witch approach. He hears her say, "Rapunzel, Rapunzel, let down your hair!" and then he sees Rapunzel drop her hair, and the witch crawls up.

So he waits for the witch to leave, and then he goes up to the tower, and he calls out, "Rapunzel, Rapunzel, let down your hair!" Rapunzel drops her hair down, and the prince climbs up. At first, Rapunzel is scared of him, but he talks gently to her, and she falls in love with him.

And then -- umm. I don't know. Okay, I guess the witch comes back? And does the, "Rapunzel, Rapunzel, let down your hair!" thing and climbs up and the prince kills her, and then they both climb down and escape --- wait.

No. Rapunzel can't climb down her own hair unless -- right. She cuts it off. She cuts off her hair, and they both climb down it and escape and -- what a brainless twit. She couldn't think of this on her own? She's sitting around all day long every day staring out a window and it never occurs to her that she could use her own hair to escape? What the hell kind of story is that?

Oh. And they lived happily ever after. The end.

Thanks to Kristin, every time I get into story telling mode now, I can't resist starting with the Brady Bunch and the Beverly Hillbillies.

For the longest time I'd only remembered two lullabies: Mockingbird and Twinkle Twinkle Little Star. I've played Pat-a-Cake with Kiki, which she loves, and the Itsy Bitsy Spider which puzzles her. And lately I've recalled Yankee Doodle and, thanks to her bouncy chair, the Farmer in the Dell. I know I know more childhood songs. I'm beginning to think I need to resort to renting Barney videos (shudder).

And probably I should refresh my fairy tale memory. If they're all as inane as Rapunzel, I'll probably keep them out of my repertoire, but it certainly can't hurt to re-read them. It's got be worth a giggle at least.

Saturday, July 14, 2007

Wrestling Matches

Ahh, how I remember the halcyon days of easy feedings and diaper changes. Was it only three months ago that she would lie still for both, obediently allowing herself to be manipulated in any position that was easiest for us to administer her needs?

No more.

Now each diaper change has become a wrestling match. She rolls, she twists, she kicks, she holds her legs out straight and stiff, grinning and smirking at us the whole time. She hasn't yet started to giggle or laugh, but when it comes, I know it will be maniacal.

And feeding. Good lord. She takes down the first couple of ounces, just to sate her hunger, and then it becomes Play Time. She's learned to fling her arms and grab at things, but her favorite little ploy is to streeeetch, then lunge backwards, and when you're quickly compensating to keep her from tumbling backwards, SWAT goes a plump little arm, and awaaaaaaay goes the bottle. Again, cue the future maniacal cackling.

And lately? She chews. Chew chew chew on the nipple. Thank God I don't breastfeed, is all I can say. Because this child has some jaw power, bless her heart. I know because I encourage her to chew on my fingers when she's doing her pull-ups. Hmm, this could be my fault.

I suppose this could be frustrating, but in all honesty, it tickles me pink. I certainly don't want to become one of those mothers who lets her children run pell-mell around restaurants, and when rebuked, says only, "They must revel in their independence! Do not repress my children!"

But, on the other hand, I do want her to be independent, her own person. Yes, yes, I admit to having felt pangs of maternal envy whenever I've seen young children clinging to their mamas, but really? No. I don't want that. I want a fearless child. One who will run excitedly for the merry-go-round, and squeal with delight on the fast rides.

Yeah, the best laid plans. In the meantime, she's developing her own little sense of self, and I couldn't be more proud.

Friday, July 13, 2007


Well, it's been a while since I've had a blog. I used to love blogging, and a lot of times, I do miss it. I have a couple of long-distance friends who keep blogs, and it's a very good way to keep tabs on 'em. You know, maybe they want to keep tabs on me, too. It could happen.

I considered making this a private blog, and give the address only to friends and family. I've reconsidered that. Thing is, the stuff I'm obsessing about these days is -- well, I'm not sure universal is the right word, but I think it's applicable to a large group of people. And though my inclination is to feel intensely private about it, it's not doing me any good to be that way. My urge to be private about it stems directly from being ashamed of the things I think and feel these days. And the fact is -- maybe there are other people going through the same thing who feel the same way. And if they see me exorcising my demons publicly, maybe they won't feel so badly about themselves.

Yeah, I'm such a noble do-gooder.

So I will be unabashedly public. Be warned.

A little about myself, I guess, to get started. I'm 40 years old. I live in the midwest. I moved out here in 2005. Before that, I lived my entire life on the west coast. I met my husband, Kipp, on an online game. I moved to the midwest to marry him. I have two stepchildren; a girl who I will refer to as B, and a boy I'll refer to as C. They're the only ones I'll be careful about writing about, being as I'm only their stepmom, not their mom.

Kipp and I have two dogs, a corgi mix named Honey and a blue heeler mix named Sugar. And as of April 2007, we have a daughter whom we call Kiki. As Kiki is my obsession these days, be prepared that most of what I write will concern her.

Kiki has Down Syndrome. If I didn't tell you this when you first meet her, you might not even notice. I know this only because people who didn't know, didn't guess until they were told. I don't bring it up anymore. I actually stopped informing people sometime during my pregnancy.

For those of you who know little or nothing about Downs, or are new to being a parent of a Downs child, you and I are in the same boat. I'm still learning, every day. I search for articles, forums, help groups, and all that on the net all the time. I'll share what I learn here; and I would love it if you shared with me, as well.

Also, if you're a new mother, well -- we're also in the same boat. A new baby is a new baby is a new baby. All the adjustments, yeesh. We're blessed, of course, because Kiki is a perfect baby, but we still have a few new parent bumps. Well, at least I do. Kipp's done this twice before, and he revels in my new-parent jitters. Like how I'm constantly taking her temperature or dipping my head into her bassinet to make sure she's still breathing. He gets endless amusement out of that.

I'm going to end the first entry here. Work beckons, and I have to get done what I can while Kiki sleeps.

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