In Between

Today I read a story that brought tears to my eyes.

If you're interested you can find it here:  nice story

While I feel heartened by this story, I also feel a bit uneasy.  Part of me is overjoyed to read about the children's kindness by giving this boy such joy and I hope that my daughter may some day have this kind of acceptance if she needs it.  But then I think about another side of it:  that she may not need that kind of special treatment.  There are those who feel that their children with Ds are limited only by others' expectations.  Those who would feel offended by this kind of treatment.  They tell stories of their children being the smartest kids in their class, express frustration that society expects their children to have delays, and are bound and determined to do everything in their power to help them realize their full potential.

I feel that I am determined to help Cora realize her full potential.  But I also am wary.  I worry that if I refuse to allow her to experience any delays, then I will be disappointed and let down if she does not do things "on schedule."  And I don't want my expectations to compromise my acceptance of her.

We work with her to give her opportunities to succeed:  We give her supplements.  My husband builds her tools: a crawling track, a bench, a desk, a weighted bin to pull up on.  We both put her through "therapy-play" on a daily basis.  She breastfeeds and eats almost exclusively home-made, high-quality whole foods.  We work with her on a baby reading program, sign, read and sing to her.  We expose her to our community and to age-appropriate activities for typically-developing children, as well as events for people with Ds.  We take her to the naturopath, the chiropractor, another who does craniosacral, along with a myriad of other "required" medical specialists.  We expect her to wow us with her life, and we are encouraged and impressed regularly by her accomplishments.

Yet she's still developmentally delayed in gross motor, fine motor and speech.  She shows comprehension in many ways.  She understands phrases we use commonly, she is able to do the motions to her favorite songs (though she chooses not to most of the time), she is able to feed herself (though she chooses not to most of the time), she is able to mimic some of our sounds (though she chooses not to most of the time), and she responds appropriately in many situations.  But there are many things that typically-developing children her age are doing that she does not do and just doesn't seem ready to do.  Whether she can yet or not I don't know.  Most of the time it isn't clear if she understands what I say.  She doesn't say words yet (although she consistently says "hi da" to both me and her dad, which he is convinced is a greeting she gives to us both).  Is it wrong that I am skeptical?  I so want to believe that she is capable of greeting us verbally with intent.  I feel horrible that I doubt it.  But what if it's just a sound she likes to make?  How do I know?  How do I expect the most of her and at the same time avoid disappointment?

I say these things aware that she has delays, and accepting them as part of where she is now.  I expect her to catch up.  I expect her to be reading before she enters school.  I plan for her to be included in a regular classroom with peers her own age.  But I am also learning that I am okay with it if that is not to be.  I can expect that of her and want that for her.  But I also am learning to be okay with accepting her for where she is at the given moment.   I have to be okay with the fact that things may be more difficult and may come slower for her.  I can expect her to graduate high school with her class and go to college at the same time that I can accept it if her own goals are different, or if her full potential doesn't look exactly the way I always hoped it would.

Because really, her value doesn't exist in what she is able to do.  It exists in her.  Just her.  I see it in her smile and I feel it in her squealing giggle, barely able to be contained in her voice and in her face as I bounce her across the room.  I see how other people respond to her contagious babbles and coos.  I see them lean in and feel her pure joy for those moments, the way I am blessed to feel on a daily basis.

I expect her to have a grand life.  The value of that life will not be simply the compilation of her accomplishments.

I can expect her to achieve.  I can expect her to soar.  I can set no limitations and support her to reach her highest potential.  And I can accept it if that potential looks completely different from the definitions I had set in my pre-Cora life.  That may sound like a contradiction.  But I am learning that it is not.  I know that in our society we tend to pit the things we view as opposite against one another, convinced that they cannot co-exist; that it isn't possible.  Perhaps I'm re-learning to appreciate a more Tao-ist view and learning to find contentment somewhere within my seeming contradictions.  I could think that maybe I'm becoming more relaxed; even though I don't think I'm really "there" yet.  (Those who know the anxious, organized, plan-ahead me are probably smiling right now.)  I guess I'm still learning where my own place in this in-between world really is.  I guess I'm finding it all the time.

Hallelujah! Ready, Set... Surgery!

After yet another night of insomnia, I am turning into a real basket case.  Seriously, I've felt on the verge of crying all day.

Yet, we had some great news this morning.  We went to our first visit with the ENT and I am so glad we did.  Our pediatrician had advised us to wait until we had the sleep study done, but considering that we can't even see the sleep doc until mid March and a sleep study probably won't happen for weeks after that...  well, we just couldn't wait.

After the exam, he told us that her tonsils are huge and that he'd like to take the tonsils and adenoids out right away.  The scheduling process is underway and we should hopefully have it done in the next 2-3 weeks, fingers crossed.  I came very close to crying with happiness (although not a huge stretch for sleep-deprived me.)

Who else is thrilled to find out their baby should have surgery?  In this crowd, I guess I'm probably not alone.  Her doctor says we will probably notice an improvement in her breathing as soon as the same day.  And obviously, we hope that this will improve her sleep, and thus, improve ours.

So I am very, very excited.  Happy that there actually is something going on.  Happy that we can take some action even without waiting forever for the blasted sleep study.  Happy that it's not all in my mind.  (Well, chances are, my insomnia is in my mind.  The constant wake-ups courtesy of Cora are not.)

So that's the update.

I think I'm too tired to post a picture.  I've certainly been too tired to take any pictures.  Rain check?

Oh, Mr. Sandman?

Have I mentioned lately that there's not a lot of sleeping going on around here?

I think I may have, once or twice.

Things came to a bit of a desperate head a few days ago, and after much pleading, Nick finally agreed that we could officially start taking shifts with the Bean to at least try and get half-nights of individual uninterrupted sleep.  So that was working well.  After a couple days of OK sleep I finally got a good night of sleep (because I went to bed so dang early, I got almost 7 hours of sleep before going into be awakened frequently for the next 3-4 hours.)  So yesterday I was feeling pretty darned good.

Then last night, I tucked myself in at the "late" hour of 9:30.  And looked at the clock until at least 3:30.  I tried reading.  I tried breathing and meditation exercises. I even tried to count sheep.  Why?!  Why?!  Then I settled in with Cora and actually slept, if you don't count all the wake-ups.

I know everyone deals with insomnia sometimes.  Some people deal with it all the time.  It's just that it seems that half my mental energy is directed at helping Cora to sleep better, so I feel so defeated when I can only blame my lack of sleep on me.

Not to say that I I'm never tempted to blame it on Cora.  But really, how can I?  She's 12 months old.  On a good night she wakes up only 8-10 times.  On a bad night it's more like 50 times.  Sometimes I just lie awake listening to her try to breathe, but then her breath gets stuck and she gasps for air, waking herself up.  The poor girl just needs to get some sleep.  She needs to help that little developing brain out.  But she can't, because a couple hours into her night, she just can't seem to stay asleep.

Do I sound a little manic?  A little desperate?  Actually, I feel a lot desperate. 

One thing I've noticed about becoming a mother is that whatever crisis you're dealing with, it feels like an enormously huge thing.  Like heart failure.  Or open heart surgery.  Or constipation.  Or congestion.  Or not sleeping.  You'd think that heart surgery would trump not sleeping, but right now not sleeping feels almost as bad.  Almost.

Well, now we're in full pursuit of some sleep help but there is a LONG wait to get in.  Dang it!  Why did I drag my feet about this for so long?  Now we have to wait until mid March to see the sleep neurologist.  We're seeing the ENT tomorrow, even though our pediatrician basically told us it would be a waste of time to do before seeing the neurologist.  But oh well.  We'll take what we can get.

OK, time to go get the little girl who just napped for a whopping 40 minutes.  Here's hoping tonight's a better night.

And, for sticking it out through this whine session of mine, how about a cute picture of Miss Beanie to take our minds off it all?

A bit blurry, but this shows how much she loves Baby Signing Time.  I wonder... how bad would it be to play our 4 discs over and over today?

Oh, These Rainy Days

I've always loved the rain.  There are those who think I am crazy.  Those who cannot comprehend why I was so happy to leave sunny San Diego to come back to the Pacific Northwest.  Those people may not have see-through white melanoma-prone skin, but still...

That said, rain-loving me is getting a bit tired of it.  When all our friends and family in Seattle got snow days last week, our snow always melted by morning and then swiftly turned to rain.  And these cold, sideways raining days are not so much fun when you want to play outside.

So we've been having cabin fever.  Perhaps that's why Cora is rocking her mismatched stripes in these pics.  Or perhaps not.

We tried to fill up our rainy weekend with fun family things to do.  So we went to OMSI, the Oregon Museum of Science and Industry.  Pretty fun and I know it'll be more fun when Cora is old enough to actually play with some of the cool stuff.  Even so, her Daddy had fun showing her around.

He is a biochemist himself, and although not working in a lab at the moment, has spent many moons in fashionable chemistry goggles.  So Cora wore them quite naturally too.

We filled in the gaps with some swimming, Baby Signing Time, books and songs, and some fun therapies at home.  I don't think Cora thinks therapy is as much fun, though.  She still gets majorly mad when we try to bend her knees, or heaven forbid, coax her rigid little form into a quadruped position (hands and knees for those people who don't participate in Early Intervention or other physical therapy). 

Still, it was a fun weekend.  But I know that we will gladly accept the return of springtime, when Cora can return to one of her favorite activities:  swinging.  Even just a dry, moderately cool day will do.

Decompression

I'm sitting down now, for once this week without a pressing agenda. No baby grunting at me from the floor, no television in the background. The only sound I hear is the breathing from my husband, fallen asleep on the couch. Yes, we were up that early. And no, we still aren't getting much sleep around here.

So what's new?

Well, my girlie is officially a one-year-old. After all the build up the actual day was pretty mellow. That evening I started to complain to Nick that we didn't do enough for the actual birthday, when he reminded me of all the fun we did have: sleeping in snuggling and singing to one another, Daddy at home, swimming with the three of us, a day full of reading and smiling and eating and love. Then a happy-hour with some of our best friends at a great little place that is only kid-friendly in that there was an actual high-chair. Cora ate and played and snuggled until she got too tired. She rocked the gorgeous and elaborate headband that seemed to shout "Birthday!"

Thank you, Aunt Teenie for the beautiful headband!

Yes, she is chewing on the cocktail menu.  What?  It's her Birthday!

 

All day long, I kept waiting for the constant question... "How old is she?" For some reason, I am always proud to be able to tell her age, since I know that she looks a bit younger. I couldn't wait to say that "She is ONE TODAY!" So, of course, on that day alone nobody asked. I couldn't help it though... at the pool I told the little girl fawning all over Miss Beanie that it was her birthday.

We couldn't wait to weigh our Little Miss, who was feeling so heavy, and looking so absolutely rounder and fuller. So onto the scale she went,  while we envisioned an 18 pounder, or at the very least, up quite a bit from her 11 month 16 pounds, 10 ounces. But do you want to know how much my big girl weighs? 16 pounds, 12 ounces. Yes folks, she's up a whole 2 ounces! So funny! I admit that I love that she's little. I love that I can still hold her for long periods, and that she still fits in her infant carseat and that she wears size 1 shoes.  Oh, how I wish I could keep her this way longer.

Yet somehow she seems intent on doing some growing up. She's moving around now, although still a bit reluctantly at times. Yes, she'd prefer that I do most things for her, including feeding her, playing with her, and doing all hand gestures. If she had her way, I would move her around, hold her constantly and bring toys to her. So now we're letting her try and maneuver her own little self around. Poor Cora.

And her latest grown-up assertion of her autonomy is her grunting, groaning and yelling. She's a talkative little babbler, and has loved to yell for fun. But now she realizes she can grunt and yell to complain and she's taken to doing it pretty darn often. Especially yesterday. Oh, yesterday! Yeah, yesterday was frustrating. I'm not sure the best way to deal with it, but here's to hoping it's just a phase.

Today was much better. Two separate shopping errands gave us the opportunity for one of my favorite things to do with Cora these days: walk around with her in the shopping cart. She sits and beams huge silly grins at me the whole time, kicking her legs and talking away. I can't do anything without constantly laughing and talking to her. I'm sure it looks pretty silly, but she's been melting hearts all over town with her toothless smiles and sticky-uppy ponytail. Oh, that girl! She makes me just silly with love. And that's not even factoring in the laughter.  You should hear the songs I've been making up as I bounce her around the house just to hear her sweet giggles.

Ok, enough on the gushing about how twitterpated I am with my girl. Think I'll upload a few pics and then head to bed early. (Hey, it's the only way I can even hope to get more than two hours of unbroken sleep!)

Thank you all for the lovely Birthday wishes.

They Say it's Her Birthday!

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Happy Birthday Eve to Me

One year ago today I was coming to terms with the fact that I was in labor.  I had spent the day in denial, at first arguing with Nick who wanted me to stay home from work, then timing my contractions on post-it notes at work.  The midwives had just left after my urgently worked-in home visit, leaving the birthing tub "just in case."  I was just starting to give in and focus on the self-hypnosis training I'd spent months practicing.  And all the while I was envisioning myself holding this little person I was soon to see face to face.  This little person that I'd already come to know so intimately as she wriggled and kicked and snuggled up inside.  My little Cora was soon to arrive.

The birth was hard.  Labor wasn't too bad, even with a night of back labor.  The birthing tub, Nick's constant low-back massage and my hypnosis techniques kept me going, along with my visualization of myself with my baby girl.  I focused on her name as I floated through contractions.  And then when it was time to push, I growled out her name as I learned how to push.  I guess you could say it took awhile to figure it out.  She got stuck.  Maybe it was her position.  But for some reason, she got stuck for hours.  After a total of 6 hours of pushing, an IV, some herbs and a discussion that our next step would be the hospital, she finally made it out with some vacuum assistance.  At that moment I thought I'd never been so grateful to just have it over, that I think I forgot there was a baby.  When they suddenly swung her up onto my stomach (OK, so it probably wasn't so dramatic, but at that moment it did seem like she was thrown on me) I was a little shocked.  I'm sure most new mothers are to some degree.  I was shocked and exhausted, and then surprised to see a little something different in those dark blinking eyes.  Even now my first memory of her is like the little squid alien from Men in Black that blinks at Will Smith after he delivers it.  That was how my baby looked.  A blue turned pink little alien girl with blinky black eyes that were trying to tell me something.

I know now that those eyes were looking right at me, right into me.  Those eyes were finally telling me what I'd been waiting so many months to see.  The surprise then was painful.  So painful.  But thinking back on it now, I feel the happiness and the tenderness of my feelings.  The pain has somehow blended into the love, making it feel so much more intense, so much more acute, so much a more powerful love than I ever expected.

Sometimes I wonder if I will love another child (if that is to be our future) the way I love Cora.  Or even as much as I love Cora.  This love is in part keenly protective, in part complete adoration, and full of utter ridiculous devotion.  At this point I feel that I was given a gift to love her more, to aspire to help her on her path in life even more, to be her parent (as silly as that sounds) even that much more than I may have otherwise.

So tonight I am grateful.  Grateful that I was given this gift, this girl.  Grateful that with all that she's been through she's here to celebrate this milestone of a first birthday.  Grateful that she's rocking this life and has influenced so many other lives already.  Grateful for it all.

Wistful

Photo by Shon Taylor

The weeks leading up to this big deal of a birthday have been fairly emotional for me. 

Recently, while talking with my sisters about my reflections on my entrance into motherhood, I realized how much sadness and grief I still have about it.  But not necessarily the grief you might think I mean.  Yes, I did grieve when I learned that Cora has Down syndrome.  But that grief was swiftly eclipsed by all the medical commotion that happened afterward and happily by my growing and all-consuming love.

I've discovered that the grief that I still hold onto is for all the fear and sadness surrounding those first several weeks:  the fear of losing her mingled with sadness at not having been being able to appreciate her infancy without the risk of medical emergencies.  As her first birthday draws near, I've been reliving my worst memories:  the terror that we wouldn't make it to the hospital in time as she repeatedly turned blue, or watching as the cardiologist reviewed her tests and showed me a drawing of her heart defect.  My own heart felt like it had stopped as I asked the doctor whether it could be fixed.  I had to ask him to repeat his response, because my heart had decided to start pounding again right when he answered, and in my terror I could have sworn he had told me no.

I think back to that fear, to that moment of not knowing whether my baby would live or die, and all the doubts I'd had when she was born the day before:  doubts about my ability to be her parent, to be proud of her, to love her with all my soul and to share her with the world, all of them seemed to vanish.

I guess I still mourn the loss of my imagined introduction to my daughter, sad that I bonded with her through her NICU bassinet and force-fed her through a syringe.  Sad that I listened to the nurses who told me that I shouldn't hold her too much if I wanted her to grow enough to come home.  I've been coming to terms with the fact that my first experience with the true unconditional and powerful love of a parent was also mingled with those fears and the resentment that I had to prove my ability to care for my child.

Maybe it's time to listen to my sisters and to let myself feel all the emotions that were swept under the rug in my effort to just get by and to take care of my girl.  So I'm working on letting myself feel that pain and accepting this as part of who I am as a mother.  I'm trying to let myself grieve without guilt, so I can continue to love without restraint.  Happily, just acknowledging this is helping work out the kinks.  And I imagine that time will continue to fade those scars.

Let the Birthday Celebrations Begin!

We spent the last few days celebrating the Beanie's upcoming first birthday.  With her big cousin Kai still on the west coast for a few more days, it was the perfect time to throw a joint birthday party for these adorable kiddos.  Family came down from Canada and we even got to meet a brand new second cousin!

My sister Erin felted the babies some birthday crowns, which they proudly wore.  They had cake and ice cream, (coconut ice cream for my food-sensitive girlie) opened presents, and enjoyed tons of attention.

"What?  Is there something on my face?"

 I almost posted the video of the Happy Birthday song, but then I realized how absolutely horrible it sounded.  We discovered the day before while singing to a far-away aunt over the phone that our family's typical birthday singing made Cora cry.  And it's not hard to understand why.  Well, maybe it's hard unless you actually HEAR us sing Happy Birthday.  You see, I come from a very musically challenged family.  There are a few of us who can carry a tune (me included) but the rest... nope.  But on birthdays, we hold nothing back.  In fact, even if you CAN sing, it's expected that you will forget how and join in the cacophony.  The lucky recipient gets to bask in the LOUD, off-key, off-rhythm shouted singing of the group of us.

I guess we just decided that it wasn't a good idea to make Cora cry during her own birthday celebration, so we toned it down and tried to sing nicely.  At least that's what I thought until I listened to the video.  Ouch...  The babies are both just staring open-mouthed at the candles and looking around all confused, so it's not THAT entertaining anyway. Hmmm... maybe that is entertaining.

Cora LOVES Favorite Aunt Mira!

Mmm.  The birthday wand seemed quite yummy.

Cora's awesome new hand-knit leg warmers, courtesy of Aunt Mira!

It was a blast to see how loved these two little members of our family have become in such a short amount of time.  We all were wowed by Mr. Kai, who has during this visit, added a number of words to his vocabulary, started to take independent steps when he thinks nobody is looking, climb stairs, enjoy reading, and point to colors.  The accomplishments this cutie makes daily are enough to startle and amaze this mama, who is used to a whole different and slower pace.

And we were no less impressed by Miss Cora, even though often her antics included simply sitting on the floor, waving her arms and smiling up a storm.  But there is something so absolutely captivating about this girlie's smile.  It doesn't take long for her to wrap even the non-baby-lovers around her pudgy little fingers.  So then when she starts to do something truly exciting, the number of people standing around cheering are enough to make any mama proud.  (I'll wait until the end of the post to share her newest milestone with you all.)

The birthday pair!

Cousin Kai rocking his B-day crown with Mommy!

More books for my favorite little book-loving girl!

Cora is awesome at opening presents!

And Cora's big news:  She has started doing her own version of an army crawl!  She started experimenting with moving around a little while ago, but it was pretty inconsistent, so I was hesitant to brag.  But now she's full-on mobile, although it's still hard work and she has some interesting techniques!  Here's the smile you can see after she reaches one of her favorite toys and is rewarded by a roomful of cheering. (Photo courtesy of Uncle Shon)



Stay tuned for more birthday related posting until the big day on Friday!

All in a Tizzy

I've been having blog withdrawals.  I think about blogging every day.  I talk to myself in my head, composing ideas and paragraphs.  But I keep getting interrupted.  Maybe there is too much to think about, write about, post about.  Or maybe not.  And picking up the camera today I discovered I've barely turned it on since Christmas.  (Sigh).

I've been getting excited and obsessed with year-end reflections now that we've rolled into 2012.  And of course, my little Bean turns the big ONE next week, so that's been weighing on me.  Despite wanting to plan celebrations, both big and small, I find myself thinking and not doing.  Yes, we'll have an early 1st Birthday celebration this weekend for both Cora and Kai, which will end up being the "big to-do".  I think we'll keep things quiet for the actual day and just celebrate with the three of us at home.

But oh the emotions I'm having these days about it all.  So much pride, so much love, so much nostalgia.  To top if all off, I finally bought the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.  So much love and inspiration in there.  So much that I feel could have come directly from my own heart.

I guess I'm in a bit of a tizzy.  Where are all those partially written blog posts I've been composing when I need them?

I'll keep thinking and hoping that somehow I can transpose my feelings into words and save them here for my girl.