A Quick Beanie Fix

No, Cora has not dropped off the face of the earth.  Far from it.  She's been going non-stop.  In between all of the hustle-bustle, I've barely been able to take pictures, let alone to write about what we've been doing.

During the last couple of weeks we spent time with my sister Erin and her family, including little Cousin Kai, who is just 4 days older than Cora.  I'm always excited to get time with my little sister when she's in from Vermont. Except that this time, Miss Cora decided that Kai is terrifying. I'm not quite sure why, since he is often the perfect little toddler gentleman, willing to share, wanting to give some love to his cousin, and not sure why she always cries when he looks at her, gets close, or heaven forbid, vocalizes at all.   Poor little Kai.  And poor little Cora.  So most of our visit was spent keeping them apart and keeping them happy.  So not much time for all the photos I'd love to take of them.  I have no idea if there are even any photos of the two of them together this time.

With Erin visiting, we were out and about and all around, visited the Oregon Country Fair, hung out here in Portland, and went up to visit at my parents' house near Seattle.  In between, Nick and I took Cora to Bellingham to visit his sister and stay at a house on Lake Whatcom.  Oh yes, and I worked, and played, and took Cora to a couple doctor's appointments, and Nick worked on my car.  And so and and so on.

I've been feeling a bit like a chicken with my head cut off myself and I don't anticipate that feeling to stop any time very soon.  On Saturday we're hitting the road for a two week road trip to California.  Fingers crossed that I can keep Cora entertained and still chronicle our adventures for your viewing pleasure.

For your Beanie fix today, I don't have much to offer beyond these smartphone pics from our weekend in Bellingham.  Get a load of this baby/Daddy love. 

Oh yes, and a quick little shout out to my loving husband, on this day almost a week past our 3-year wedding anniversary.  We are so wrapped up in this parenting thing that we forgot about it until the night before, just as Cora and I were getting ready to head out of town once again.  Yes, romantic... a quick "Happy Anniversary" wrapped it up.  Maybe next year...

I do love a man in Tabasco pajamas.

The Influence of Disability- Blog Hop!

The blog prompt for the Summer Disability Series Blog Hop this time around is about the influence of disability in your world.  To the point:  How have earlier interactions with people with Ds influenced how I felt about Cora’s diagnosis?

As I have admitted in previous posts, I don’t remember any children with Ds growing up.  I really don’t know if that’s because there were separate schools or classrooms, or whether there were no people with Ds in my community.  I know that people of my generation with Ds weren’t usually “mainstreamed.” I’m truly not sure whether my lack of awareness was simply me being narrow-sighted or whether I simply lived in communities where individuals with Down syndrome were not seen and heard.  As an adult, I must admit that I just didn’t look or didn’t notice. 

But even so, I definitely had some ideas about what Ds was.  I could say that I knew that it resulted from an extra chromosome, and I could recognize the physical features of Ds in a person.  I thought of Down syndrome as a fairly severe disability.

Yet in truth, most of my experience with Ds probably came from television.  I was so into “Life Goes On” when it aired.  I was attached to Corky and his family and felt like I could identify with them, even though it was something distant.  But as accepting as I thought I was, a college friend who was good with a guitar once wrote a song that I remember laughing to.  “My name is Corky. And I’m dorky. And I eat my spaghetti with a forky.” Probably benign, but it makes my stomach twist to think that I once thought this was funny, just because a character had Down syndrome.  I remember seeing episodes of Law and Order-type shows depicting adults with Down syndrome.  The plots usually revolved around people with Ds wanting to live independent lives, and their struggles to do so, usually with the rest of the world certain that independence was impossible. 

I think that overall, my lack of exposure—that gap in my understanding, really made my introduction difficult.  I really had very little frame of reference.  Discovering that Cora has Down syndrome was one of the most shocking and painful moments of my life.  I really felt like all the dreams I had conceived over the years went out the window.  My biggest fear was that she wouldn’t be smart.  Oh yes, the pre-Cora me was big on smarts, and not as accepting as I had always thought I was.   Of course I would have the most intelligent and precocious child, capable of graduating college at age 2. 

And of course, I tried to wrap my brain around all the usual worries: how severely disabled I imagined she would be; that I would never be able to work again; that she would live with us for the rest of our lives, completely dependent.  I assumed that her potential would be so limited.  I thought that I had created a defective person.  I felt ashamed and embarrassed that my baby was different.  And now, in retrospect, I wonder why I felt this way.  I feel shame and embarrassment that I ever felt this way at all.

My re-education began as I fell in love with her.  An information seeker, I began to read.  Thankfully, the things I read and heard started to show me how much potential she may have.  I began to focus on the things that she would likely be able to do.  I spent her early months envisioning all the ways she would excel and achieve, sure that she would be the one to achieve milestones close to a typical timeframe and wow the world with her accomplishments.

At this point my expectations have again shifted.  Yes, I am proud of her accomplishments so far and I am quite sure I will continue to be.  But I don’t see how it could be any other way.  Regardless of her strengths and abilities, she is perfectly Cora and she is perfect to me.  Even if she doesn’t achieve every goal I may have for her, “on time” or even at all, I am constantly amazed, impressed and happy with her.  And even though there are people who look at us with pity, I am always encouraged by the many people who are so impressed with her, as well.  (See, it’s not just a mother’s unconditional love—she really is amazing!)

My perception of what is great and valuable is indeed evolving.  What constitutes great for Cora in my eyes has shifted.   

What I see as great and valuable out in the world has shifted.  My community has shifted and contains a group of people that I never expected, but that I certainly wouldn’t trade for anything.  And for that I am very grateful.  I've also been happy to meet such a great online group of people who have been giving me so much more insight into disability and our culture's perception of disability, people who are helping me to refine my own value systems.

It was an unfortunate realization to learn just how ignorant and blind I had been to people with disabilities.  But that is the great thing about living and learning… learning. My eyes are open to so much more, and for that I am far from unfortunate.

18 Months of Amazing: State of the Bean

 18 months old!  I can't quite believe it.

Today we are celebrating Cora's half-birthday by having a typical Friday: a little bit of work, some playing outside, and some time spent reveling over all the fun she brings to our lives.

My last post was a little whiny, which I am a little embarrassed about.  But I guess we all have those days where we feel less than optimistic and just need a space to vent frustrations. 

Instead of focusing on my impatience, I've been focusing on the growth that I am seeing, day by day.  Just today she said "book" (although without pronouncing the "k"), and yesterday she signed "pig" for the first time (without my prompting), while we played with her little piggy bank.  And she was doing great getting those coins into the slot too.  She's getting up on one knee more and more, and is doing better getting around, with her little scoot-hop.

Although she stopped speaking most of the words she had been saying a while ago, she's starting to pick up again, repeating what we say and sometimes speaking appropriately without prompting. Go Cora!

She's having a blast as the tickle-monster, excited to "Get you! get you! get you!" at all hours of the day and night, putting her little hands up to our necks (although not with wiggling fingers, quite yet.)

She loves to dance, whether she's lying on her back or standing up.  She still needs quite a bit of support to bend her knees, but she's doing it more and more.  In fact, today she voluntarily put her own legs into a squat position and tried to pull up.  Not quite there, but on her way.

I even think she may be learning to read.  Perhaps this is wishful thinking on my part, but while reading her favorite book Goodnight Moon the other night,  she pointed to the words "mouse" and "bear", rather than the pictures.  Perhaps she's just learning this book really well, which would be a wonderful step in her development of early literacy.  But maybe, just maybe the reading program we've been working on for months is starting to show some results.

I think one of my favorite things she does right now is during Goodnight Moon.  Before we get to the "old lady whispering hush", she turns around and puts our fingers to our lips.  We started this, of course, but now Cora anticipates it even before we turn the page.  She moves her hands or our hands through signs, points out all the pictures, and oohs and ahhs the whole time.  I really have to get it on video, since it's so darn sweet.  I think she's signing a lot more than I really know, because she is always practicing and moving her hands around, but I admit I'm just not sure what she's trying to say. 

She hovers between being very social and smiley to ridiculously shy.  Just yesterday she melted down at a playdate with the sweetest, most mellow 9 month old for no explicable reason.  Apparently beautiful Lily was just terrifying.

 She is exactly 19 pounds, a little smaller than last month.  That puts her at almost 50% on the Ds growth chart, but still not quite on the typical chart.   Her pigtails are growing longer and the little bald sides of her head are starting to fill in.  The strawberry colored glints are returning to her hair. 

She is loving the swimming and the sunshine (mostly from the shade), the swinging and the dinners on the deck.   She loves Baby Signing Time and Potty Time and Elmo's World.  Pulling the books off her shelf and reading is one of her favorite things to do.

She is 18 months of amazing, ridiculous, loveable delight.

Slow, slow, slow...

Sometimes I am happy with taking things slowly.

But sometimes things move so slowly that it's hard to recognize whether there's progress at all.

I've been feeling a little impatient of late.  It just seems like my Little Miss is never going to get there.  I know that isn't true, of course.  But part of me wonders just how far her 47 chromosomes of stubborn may take her.

I know to expect her to do everything, but to expect it to take longer for her to get there.  I know it, I do.  But sometimes it just feels like it's taking forever.

There is such a range for development in the gross motor department.  I see kids all the time (fellow 47ers) who have been doing so much more than Cora for quite some time.  Kids who are walking, who've been crawling and pulling to stand for months, who are cruising around furniture and using push-toys.

But this girl really doesn't want to do it.  In the past few weeks she has actually started voluntarily bending her knees while being held in a standing position or during the very limited time that she deigns to actually stand holding onto something.  I encourage this all the time since this girl loves to dance.  Anytime I say "dance" she starts bopping her head up and down, and if she's standing, she'll slightly bend her little legs, snapping them back into locked position.  (The really cute part is that she will look down at her knees when she does this.)  It's obvious that it's hard for her to do.  She can pull to stand when she's sitting on a bench (taped together phone books and pulling up onto a weighted plastic bin), but she really doesn't like to.  She's also starting to move forward onto one knee (with the other leg splayed out to the side) while sitting, especially if, like on the bed, she can't easily butt-scoot to where she wants to go.

Still, trying to get her to be on hands and knees is like pulling teeth.  Sometimes she'll let us maneuver her little limbs, but then she'll yell and throw herself forward onto her belly, immediately pushing herself up to sit again.  If we try and help her "walk", she just keeps her knees rigid and fights the whole time.

I've totally been slacking on working with her on it, since she hates it so.  I agree with her therapist who thinks that forcing her to do exercises that she hates will just backfire on us, causing her to refuse them even more.  So I've backed off a bit, hoping that she may decide to move forward on her own.  I'm just not sure if that's true.

So today I thought I'd try again and worked her a little harder.  She was not happy with it, but eventually did enough stand-ups and sit-downs from her bench to satisfy me.  Then I took her on the stairs and moved her little knees up to the next step, encouraging her to reach above and pull herself forward.  Again, not super successful.  But I guess I will keep up with it for a few minutes a day at least, and see if she starts to make any progress.

For now, she is ever-so-slowly scooting on her little bum across the floor.  That is, if I'm not in arm's reach.  Otherwise she just whines for me to help her.  She's learned how to move across hard wood with shorts on (something that was challenging since she couldn't just slide across the floor) and now she does a little hop, one leg forward, one leg out, pulling with her hands.  But she's not moving very quickly.

The actual slow movement isn't so bad, since it still makes it a little easier to take care of her.  I guess I'm just feeling impatient and wanting her to make progress.  And I want her to want to do these things.  I want her to want to stand up.  I want her to be willing to bend her knees enough that she can develop some strength in those weak little legs.

Heck, she'll probably start walking tomorrow (ha ha!) just to show me up.

Parents of other kids with low tone:  Do you push and push your child despite serious resistance?  Any tricks that worked for you?  Any ideas on how to make bending knees fun (in addition to dancing)?

In her favorite position of all: sitting still!

Splish Splash!

It seems that summer has finally decided to grace us in Portland. The weekend has been beautiful.  I was excited to spend our time outside, but Cora's little body had other plans yesterday.  Stomach bug plans.  She spent the day huddled into me, pale, limp, fevered and vomiting.  No fun at all.

Today she woke up her typical self.  So we were able to commence with summer plans after all.  A walk down to the local Farmer's Market and through the park, some time in the still chilly kiddie pool, and a few tastes of a peach popsicle.  So far so good.

She wasn't too excited about the cool water at first, but she warmed up pretty quickly.  Since it was pretty full and she's a slippery little girl all sunscreened-up, I got in with her. 

There's not much better than a big green ball.  She's working SO hard to lift the ball up and throw it down.

Uh oh, it's an accident!  Singing Cora's favorite song from Potty Time entertained her after she slipped a little.

 Splish splash!  Face-fulls of cold pool water are a must.

I can't stop smiling over those last couple pictures.  I can't believe that I get to be the recipient of all that joy and love.  Oh I love my girl.

River Days- Enjoying the Fourth

Growing up, I was fortunate to be part of a family that prioritized getting outside and enjoying the beautiful world we live in.  Although the Pacific Northwest is rainy and depressing for many, that rain comes with some gorgeous territory.

In the summer we'd spend every other weekend camping.  Not hard-core backpacking usually, but not campground camping either. We'd drive along logging roads, taking our mini van where mini vans typically don't go.  We managed to seek out some great spots.  One of our favorites was along a river, complete with a beautiful swimming hole and rocks to jump off.  Really lovely.

Yesterday's adventures really brought back my love of that place.  To celebrate the Fourth, we drove out to the forest along a breathtaking river and sat down in the sun and shade to watch the flowing water, egg on the ones brave enough to take the plunge into the icy water, and allow our littlest outdoor enthusiast some time in the great outdoors.

Cora and I sat by the river, as she told me all about how exciting it was.

No, Cora is not wearing a white suit. That is her real skin color.  No tans for the melanin-deprived.

She sat on the top of the rocks and nursed.  She people watched and nature watched and had an all-around lovely time.

Beanie girl with her Favorite Aunt Teenie

It was really a perfect day.  We even made it home by 7:00, just in time for our girlie's bedtime.  I spent the rest of the evening listening to the booming outside, opening the curtains once to peek at the fireworks.  No, this year was not about the noise or the party.  It was about a handful of friends enjoying the beautiful place we're lucky enough to call home.

Family Love

Last weekend was filled up with family love.  We happily holed up on the Key Peninsula, hiding out from the rain, cooking and eating and watching Cora get love, love and more love.

As always, Auntie Mira is the greatest (even though she moves too fast for me to get a solid picture of her.)

And Grammie isn't too shabby herself.

Grammie plus watermelon made for a fabulous combination, as Cora happily whittled down her first taste of watermelon with her single sharp white tooth.

She even went to her very first wine tasting, although the only thing she tasted was the cheese.  I'm still having fantasies about the double cream sharp cheddar. Oh my....

 And now we're off and running for the week, hoping that the Fourth brings some fun in the sun.

I know I've been neglecting my Cora updates, so I'll try to do a little better and perhaps I'll even grab the camera before heading out the door.  Happy 4th to you all!

My Faith and Disability

This is a recycled post from October 2011 about Faith and Disability.  To check out the other posts or join the Summer Disability Blog Hop hosted by Meriah, scroll down.

Look how itty-bitty little 9 month old Cora was!

At the time of Cora’s birth I honestly wasn’t very focused on any aspect of faith. Caught up in the long-anticipated arrival of a child into my life, I was pretty single-minded.  In my heart I knew Cora already, knew that she was meant to be with me, but she was still a mystery.  And I certainly didn’t have a clue what her arrival would come to mean to me.

Then, when she was born, the initial shock, pain and anguish was blinding.  For a short while at least.  Not to say that I haven’t struggled with her diagnosis or experienced pain since then.  I absolutely have.  But with our mad rush to the hospital with a blue baby, and the news of her serious heart defect, everything was suddenly so precious, so poignant and so seemingly precarious.  How could I be suddenly faced with the risk of losing this baby I had wanted for so long?   

And in all honesty, the reason I was able to accept her diagnosis early on was that I began very powerfully to feel that she was given to me for a reason, regardless of whether I understood that reason.  Perhaps that is a simple sentiment, clichéd, even, but for me it began to resonate powerfully.

In the midst of feeling slighted and punished and wailing “Why me?!” into the universe I came to some of my own answers.  I know that many parents of children with disabilities are irritated by society’s opinion that they must be special themselves.  Must be stronger than the next person.  Must be more humble and patient than the next person.  Because it really isn’t true.   We’re not heroes.  We really are no more special than anyone else.   

But I do believe that I am specially and uniquely suited to be Cora’s mother.  I believe that this was a position carefully chosen for me.  Chosen by God, of course.  Chosen by the soul of my daughter and chosen by my own soul.  And this knowledge was secure in my heart, even when I was grieving what I thought I had lost.  Quite simply, this is my faith.

The powerful love and acceptance and sense of community we’ve shared since Cora’s birth has also strengthened my faith.  I truly believe that the far reaching love, thoughts and prayers that were sent to us in her early hospital days and during her surgery are largely responsible for the wonderful outcomes.   Despite all my worries and fears, I will never forget the peace I felt when we finally handed Cora off for her heart surgery, the calm knowing that she was in perfect hands.  That moment was probably one of the closest I’ve come to my own perfect faith.

I'm not sure whether the fact that she has Down syndrome is relevant.  Whether I am her mother because I am somehow stronger, more special or more equipped to be is not the question.  I am her mother because she was meant to be in my life, because she was meant to change my life and my perspective, my values and my sense of self.   She was meant to change my direction, give me focus and clarity.  And I have faith in that.