Wednesday, October 31, 2012

If I Had Known -31 for 21

If I knew then what I know now, what would I do differently?  If I could talk to myself in those early days after Cora's birth with the perspective I have now, what would I say?

I've been asking myself this question over the past couple of weeks, not sure how to answer.

Would I give myself words of wisdom, telling myself that it would all be fine?

Would I try to take away my initial thoughts and feelings and experience only the joyous moments?

I've realized that if I had known what I know now, there's not much I would change.  It's clear that I still have some feelings to work through.  As I've been writing every day this month, my thoughts surrounding Cora's birth and the months leading up to surgery keep bubbling to the surface, some of them painful still. 

But I am also learning that even though taking away my initial sadness, disappointment, frustration or fears may make me feel less guilty, or may make me feel like a stronger person or a better mother, I really couldn't and shouldn't take those feelings away.  They were things I had to live.  They were things I had to learn.  And they are part of me.
What I wish I had known was that all of my feelings were okay.  

I wish I had known that I didn't have to act like I was so strong and confident all the time.  That it was okay to be weak, okay to cry.  That it was okay to be afraid as I watched my baby deteriorate before my eyes.  That it was okay to love my daughter so completely and at the same time feel conflicted and so inadequate.

I also wish I had known that it was okay to rely on my instinct as a mother.   I wish I had known that Cora having Down syndrome, a heart defect and a hospital stay shouldn't have diminished that.

I would tell the nurses that I would not put her in the isolette to "sleep and grow".  I'd tell them I was going to hold her while she slept, and that she could grow feeling safe and warm in her mother's arms.  I would advocate more for myself as a mother, not only for answers to my medical questions and to get her the care she needed.

Photo by Shon Taylor

I would tell myself that strength would come.  That even though I didn't feel like the infinitely strong person that my friends somehow saw, that Cora would bring me strength.  That loving her was already bringing me more strength than I could imagine.  That my role as her mother is what I am meant to be: strong and weak, joyous and sad, confident and afraid.

And that all of it is okay.

Photo by Shon Taylor

Tuesday, October 30, 2012

Fancy Footwear- 31 for 21

I'm happy to say that after about 10 hours on the phone to and from Cora's pediatrician, our insurance company and the orthoticist (in addition to requests from her physical therapist and chiropractor), we finally got Cora's Sure Steps foot and ankle braces last week.

If I didn't have a background in insurance billing and coding and authorizations, I may have given up some time ago. 

But now, Miss Cora has some snazzy new kicks. 

Pretty tiny for part of a $2000 pair of foot braces, huh?

Cora has pretty low tone, which has put her a little behind the curve on learning the gross motor biggies:  walking, crawling and climbing.  It also makes her ankles pretty wobbly and significantly pronated.

Whether she's not motivated due to lack or interest or because it's so hard for her, she's been pretty reluctant to make consistent progress.

But I have noticed her wanting to scoot around more, and just being more interested in movement lately.  She's still somewhat hesitant to get on her feet, but will pull to stand if she is right next to me, and will move her feet in a walking motion if she is held under her arms.

We are hoping that with the new-found stability her braces offer, that she'll feel more confident in standing and that she will start to make a little more progress in the mobility front.

Who knows?  Maybe she'll even surprise us by getting up on two knees and four-point crawling finally.

It's all to be seen.  In the long run, I'm not particularly worried, since I know that when the time is right she'll be running around everywhere.  And like many mothers have pointed out, having a less-mobile child does have its advantages.
But I will definitely enjoy watching her explore her word from a vertical position when the time is right.

Up a size to a huge size 4 to accommodate her new orthoses!

Monday, October 29, 2012

The Cutest Little Clown - 31 for 21

You may remember that I love dressing up. Halloween has always been a favorite holiday around here, since I love having an excuse to pull out my old costume box and put together something new.

Last year Miss Cora was a ladybug, thanks to my crafty little glue gun and a few supplies.

This year I had something else in mind.  A clown.  But not just any clown.  The cutest little clown.  Taking some inspiration from Etsy, I made my own Beanie clown costume.  Onesie embellished by yours truly, the most adorable miniature hat (that wasn't as small as I thought it'd be once I put it on Cora's itty bitty head), tutu, little yarn hair falls, and some Etsy purchased leg warmers.

A couple days ago I put her in it just for photos and she had a complete meltdown.  So today I started Signing Time before I got her dressed. Genius.

Without further ado... I give you... my cutest little clown. 


Getting ready for our Halloween party on Sunday, I realized that I just couldn't go without my own costume.  So I pulled a few pieces from my costume box for my own understated clown to complement my girl.

And seriously!  My favorite Mom and Daughter picture ever!

Sunday, October 28, 2012

Hits and Misses -31 for 21

The rainy, rainy, wet and soggy weekend had us cancelling our second attempt at outdoor family photos this weekend. Boo!

But it did allow for some other fun things: a trip to Ikea, a Halloween party, and a morning at The Warehouse Cafe and Market for some yummy local food and a toddler's art class.

Cora hung out with the big kids (some 2, 3 and 4 year olds) and drew with crayons.   Lately her forays into art have resulted in defiant attempted crayon eating, paper ripping and lots of throwing.  So we were excited to see her play along and color.  Until she decided that it was way more fun to just throw things...

We wrapped up the weekend with a big pot of tortilla.  Mmmm.  That's what I love about this weather... 

Saturday, October 27, 2012

Sad Saturday- 31 for 21

"I think I've discovered the secret of life-
You just hang around until you get used to it."
Charles M. Schultz

Friday, October 26, 2012

Daddy Love - 31 for 21

Have I mentioned how amazing Cora's daddy is?

Or how very much he loves his girl?

Luckily, the feeling is mutual.  

They are silly and sweet.  In fact, as I write this they are snuggled up together sleeping, away from the camera's view.

It's safe to say that Cora loves her daddy's silly sense of humor.

She loves his tickles and the way he reads her favorite books in funny voices complete with bad accents and the way he can't seem to put on her pajamas without starting a giggly wrestling match.

When Cora was born he never wavered.  While I cried and worried aloud, talking through my tumultuous feelings, he listened and supported me and he was rock solid for Cora.

He always seemed so much stronger than I was, so calm in stressful situations, so much better equipped to deal with everything.  Whether or not that was actually the case, his strength helped me be strong.  And his strength allowed me to be vulnerable when I felt like I was falling apart.

His love for his daughter has captured my heart again.

So thank you to my wonderful husband.  Cora and I love you very much.

Thursday, October 25, 2012

Shouldn't I Have Known - 31 for 21

Reading through last year's 31 for 21 posts for Down Syndrome Awareness month, I stumbled across one of my favorite posts.  I thought I'd share it here again, as I often think about my connection to Cora...  How I feel like I've always known her.  How she is truly perfect just as she is.  

Shouldn't I Have Known?

In the months since Cora was born I've had a few moments of reflection and wondered if maybe I should have somehow known that something was a little different during my pregnancy.  At times I've even thought that I should have known that something was "wrong."

For some reason I always expect myself to be more in tune with myself and my body than I really am.  I have learned time and time again how intertwined my mind and body are; usually after I end up making myself sick with stress and worry.  And strangely, every time I am surprised that my body reacts.  There have been times too when my body has been the barometer that something is off with me, whether it be negative recurring thoughts, fears or anxieties that I try to suppress.

I always thought that I'd instinctively know when I was pregnant.  And I think that in some way I did.  Although, after my first negative pregnancy tests I was so stubbornly convinced that I wasn't that I ignored all the obvious clues for several days. (That little joke was on me!)

Yet despite my off and on relationship with my own body, I definitely felt very connected with Cora during her months in utero.  At one point in the early months, during a few days of doubt and worry I convinced myself that something was wrong, that she had already not survived. But in the midst of my fear I suddenly felt the strong and powerful presence (distinctly female) letting me know that everything was fine.  That she was fine.  Buoyed by that knowledge I remained confident in her perfection throughout the rest of my pregnancy.

During my last few months of waiting for her I practiced self hypnosis to prepare for my natural home birth.  While it may seem "woo woo" to some, the experience was immeasurably valuable during the pregnancy, during the labor and very much so during the stressful weeks following her birth.  And although it was sometimes a struggle to quiet my anxieties, I really felt like it helped me maintain a communication with Cora before she was born.  I still do feel this.  And reflecting on that, I've asked myself the question, "Why didn't I know?"

And the answer I've come up with is that I believed everything to be perfect and fine because it was.  

The initial shock of her diagnosis immediately after birth shook that belief hard.  I thought that I was so wrong to have naively believed everything was perfect.  But now I know the truth:  that I knew her already, even in those early months inside, when the secret of her extra chromosome was still hidden, and that I innately knew that she was and is perfect just as she is.

And as nice as it is to re-discover this truth about Cora, it's also nice to discover that I knew it all along.

Wednesday, October 24, 2012

An Overdue Thank You - 31 for 21

I've been reading a lot of blog posts about Down syndrome this month.  That's not surprising, since so many people are participating in the 31 for 21 blogging challenge or are posting their own tributes to Ds Awareness month. 

Many of the birth stories I've come across have talked about nurses and doctors that repeatedly express sympathy about their child's diagnosis; some of them unable to stop crying in the parents' presence.

But we didn't get that type of reaction.  I don't know if part of it is because we were the "home birthing" family who brought their baby into the hospital on Day 2, and maybe there was a stigma about that.  Or maybe because they thought that we knew all along.  Or heck, maybe because we seemed so "together" that we didn't need sympathy.

But no, nobody came and told us they were sorry.  I'm sure I'd have been pretty upset if they had, but  part of me felt like nobody was acting like this was as big of a deal as I thought it was.  We did have a chaplain visit, asking us if we wanted to talk.

But most of our nurses and doctors were professional.  Some were kind. One was rather mean.  Others were amazing.

One of our nurses (in hindsight I don't remember if she was actually assigned to Cora or not) came to us in the NICU and told us that her daughter had Ds.  She told us stories about her toddler, and about her medical history.  She told us that she had adopted her daughter after meeting her as a patient in the hospital and that she had come to United States from abroad for medical care.

In the first few days after Cora's diagnosis I would sit by her bed all day, taking only a few hours at night to go sleep in the parent room in between pumping and trying to feed her.  I held it together most of the time by her bed, but every time I walked into the parent room with Nick I would break down and sob.  I would tearfully read passages aloud from the books I was given and then fervently search for groups and real information online.  I discovered the Northwest Down Syndrome Association and ordered a New Parent Packet, but it couldn't get to me soon enough.  I needed someone to talk to, to tell me that things could be fine.  To show me that life was still life.

And our nurse friend did that.  Even though her introduction to parenting her daughter was different, she was living a version of the path we were now on.  She had chosen this life, in fact.

She provided me a kind of lifeline.  She was the first Ds parent I met after Cora was born.  I don't even remember all of what we talked about, even.

But talking with her was the first time I felt like someone had an inkling of what our life could be like.  There was no pity.  There was sensitivity, and for that I am thankful.

I have seen her at a handful of other events in our community since then.  We always talk for a few minutes and share updates on our daughters.  But I don't think I've ever really told her how much I appreciated her in the hospital.  I've never told her how much it meant to me.

Looks like I have a thank you to deliver.

My sweet NICU girl under the bili lights.  Oh the sweet cheekies!

Tuesday, October 23, 2012

My Little Teacher - 31 for 21

Yesterday was pretty eventful for Miss Cora.

It started out with a blood draw.  There were days when I would dread this for weeks and cry on the way to the appointment.  Certainly on the way out.  Luckily, Cora's last few draws have been significantly less dramatic than some of the early ones.  Although at her new pediatrician's office yesterday it did take a little bit of digging around for her vein, poor thing.  Advocate mama bear that I am, I was ready to scoop her up and demand an order to the hospital lab if it had gone on much longer, but just then her little veins cooperated.

Of course, she was screaming.  And they had me hold her on my lap in a bear hug so she couldn't twist away.  Holding a screaming child while she's being tortured is no mother's cup of tea.

But once it was over, a few seconds of snuggles seemed to make it all okay.

And my lovely little girl, in her true precious fashion, smiled and waved at the phlebotomists as we walked out the door.  

Her tear stained little face told the story, but she walked out the door smiling and playing with her Big Bird sticker.  Talk about forgiveness.  Man, I need to learn a lesson or two from this girl.

It's incredible given all that she has been through: things that most of us would never want to experience.  And she's come through it all with such grace.  I'm so thankful for the lessons my daughter is teaching me.

Monday, October 22, 2012

Pride - 31 for 21

There are so many thoughts that run through your head when you first learn that your child has Down syndrome.

I felt so alone.  I couldn't help but think of all the people having babies that were all typical.  All normal.  It was so unfair.  "Why did this have to happen to me?" I silently wailed. 

One of my biggest stresses was deciding how to introduce her to the world.  I was so embarrassed for everyone to see how I had failed.  I was ashamed to show off a baby with "defects."

I didn't announce or post about her birth right away at all.  I told my mom and sister a few hours after Cora was born, but told them not to tell anyone outside the immediate family.  I needed to feel that I was ready.  I didn't post photos on Facebook or send out an announcement e-mail.  I sat in my bed, in a daze.  Exhausted. In shock.  I felt that it was both the happiest and saddest day of my life.

A few days after she was born and we'd been dealing with the stresses of life in the NICU, I was ready to announce her arrival to my friends and family.  I asked my family to start telling people, knowing that the word would spread.  We sent out a message to friends and family, introducing Cora, explaining her diagnosis, heart defect and NICU stay, and told the world how much we loved her.  And we did.

Later, I posted pictures on Facebook to rave reviews.  At one month old, I posted my very first blog post on Our Cora Bean.

But still I worried about what the rest of the world would think.  Would they look at our girl and know?  Would they pity us?  I remember taking her on her first real outing to get bagels.  She was in her carrier, draped with a cotton blanket to try and keep the worst germs at bay.  It was her debut, in a sense.  I can't say that I didn't still feel a little lingering worry, but on that day as I took out my tiny girl, I felt pride.

I was a proud new mom, finally able to take my new daughter out into the world (not just to the hospital or the doctor.)

As time passed and I grew to know her and love her more each day, that pride grew.  I would push her around in her stroller and smile a proud mama's smile.  People would praise her, of course.  I was the mother to the most beautiful girl in the world.

I still am.  And if anything, my pride just continues to grow.  Instead of wondering if people can tell that she has DS, I pretty much assume that people know.  But instead of being nervous about it, I just think that everyone should be so lucky.  Everyone should know this kind of love.  Everyone should be as blessed as I am.

Every once in a while, I do catch some lingering looks, a few pointed stares, and quite a bit of people who just look away.  And less often than that, I find myself wondering what people are thinking, wondering if they are pitying us.  Sometimes it stings a little, but not for very long.

Really, I am just trying to love my girl in the best way I can, and to let the world see her and see my love.

When others see how proud I am, they must know that I have something to be proud about.

Because, really, I do.

Sunday, October 21, 2012

Mud and All - 31 for 21

Fall in the Northwest can mean either beautiful crisp days or sodden, gray, muddy messes.

In my pre-Cora days, I was a lover of the gray days, happy to curl up with a book, a blanket and a cup of tea and watch the rain fall.   Now that Cora is here the rainy days usually just keep us cooped up inside.  We get cabin fever.  I get exhausted trying to come up with activities every few minutes for someone with a very short attention span, and Cora seems to get tired of doing circuits in our small living room.

This weekend we had both.  At my parents' house for the weekend, while it rained we played inside and then took a shopping outing, where poor Cora was confined to the cart in Joann's.  And apparently touching bolts of fabric and trying to pull everything off each and every shelf can only keep a toddler entertained for so long.  Luckily Grammie's house has all kinds of fun things to do.

This morning the sun was shining bright again so we decided to try the pumpkin patch.  After yesterday's deluge, the mud was sticky and deep, so the hay rides were on hold.  Cora was confined once again, this time to our arms as we sloshed through the muck looking for our perfect pumpkins.  Way too close to naptime, Cora made sure we knew that it was not her favorite way to spend a morning.

It's funny how the experiences you hold up in your mind as ideal seldom meet expectations.  Mud and whining and pricey pumpkins.  Not quite the idyllic scene that I pictured in my mind.

But if I shift my perspective just a little I realize that it was also beautiful blue skies, fresh air, and time with people that I love. 

All in all, a lovely weekend, followed up by a gorgeous roast chicken for supper.  We've settled in back at home and put away most of our things.  Little Cora is sleeping soundly for the moment.

Life is good.  Mud and all.

Saturday, October 20, 2012

Scooting on Up - 31 for 21

Our pumpkin patch and hay ride plans were rained out today.  So we played inside for the most part with Grammie and Grampie.

One of the favorite features of their house are the landing and stairs.  Even before there were little kids in our family, we would all forsake the furniture and hunker down on the stairs, curled up with pillows.

The stairs are still just as popular, but are now the best place for climbing and jumping. 

Today Cora joined the ranks of climbers as she climbed her first stairs.  In true Cora fashion, she had to do it her own way. I've heard that climbing stairs can be a good precursor to crawling, especially in a reluctant child.  In the past, Cora would just lock her knees and yell as we tried to help her up stairs.

But today she decided it was worth it to try.  Just not in the typical fashion.  Instead of putting her knee up and crawling up with the other knee, she took a bum-scoot approach.  Foot or knee up (often by planting her feet far apart and doing a squat until she was standing in a crouch), then she'd scoot her little bum up to the step and then swing the other leg around.  She still took some spotting and encouraging, and then this afternoon seemed to have forgotten how. 

I remember reading that children with DS often will find shortcuts instead of learning to do things the difficult, prescribed (in what is considered the "right" way).  I wasn't really sure what that would look like, but now I know.  I'm not sure if her way is any easier, but it certainly keeps her out of the dreaded quadruped position.

Now I just wish we had stairs at home.

We tried to tell her that planting her face on the stair wasn't the best technique.

Friday, October 19, 2012

Flashback Friday! 31 for 21

Taking a cue from Anna and her adorable Ellie Bellie Bear, I give you a glimpse of some of the best Cora smiles at 5 months old.

Cora and I are heading up to my parents' house this morning to spend a weekend with Grammie and Grampie.  We'll share more later.

Happy Friday!

Thursday, October 18, 2012

Mr. Sandman, an Update - 31 for 21

Sleep habits don't make for the most exciting blog posts.  Who really wants to hear about a baby keeping their parents up constantly?  Well, maybe other parents who are up a lot too.  It's nice to know that you're not alone when you're suffering from chronic sleep deprivation.  Especially when it seems like everyone else's child sleep through the night.

You may remember that Cora had major sleep problems.  She started off life as a great little sleeper, but I soon learned that it was because she was in heart failure and then healing from surgery. But don't think that this meant I slept much.  In addition to being a hormonal worried mess, I was pumping constantly, waking up several times at night to pump and feed the girl.

Once I ended my slavery to the pump, Cora began to wake up.  A lot.  We'd hear her breath get caught in her throat and her breathing stop.  Then she'd gasp and wake up.  Sometimes every 5 minutes all night long.  Partly because we wanted to and partly because we were scared to let our baby with apnea sleep alone, she slept with us and needed a lot of help to get back to sleep.  There were some really miserable times then. Times that Nick and I struggled and couldn't find a balance.

Then came her tonsillectomy and adenoidectomy.  It was rough with significant complications.  Way worse than I imagined. But, after the long healing process her apnea was much improved.  She no longer stopped breathing every few minutes.  Her sleep improved too, but she was still up quite a lot (read: every hour or so, rather than every few minutes.)

A sleep study in June showed mild apnea that didn't seem concerning since her O2 sats didn't really drop.  She got a cold that night too, so the sleep neurologist didn't feel she needed treatment.  It also officially diagnosed her with insomnia.  Oh joy!

She still doesn't sleep very well, but at this point it's behavioral.

Cora still sleeps with us.  I could make lots of excuses.  With her apnea there is no way I could have gotten up with her all night long if she weren't in our bed.  And then she got really clingy and attached to me and I thought it was a bad time to try to transition her out.  She's still clingy and attached.  A couple of weeks ago we finished night-weaning her for the second time.  So at least she's not nursing all night long.

Part of me loves having her sleep with us.  But there's another big part of me that can't wait to have my sleep back, my bed back; a little space in the night without my girlie constantly shimmying up next to me, waking up more easily when she touches me and still needing help getting back to sleep.  Cry-it-out won't work for me.  I couldn't do it.

An oldie pic of my girlie sleeping. Lightly.

So for now we're just living with it.  She is awake at least 5 times a night and needs significant help to get back to sleep.  She can't put herself back.  And she's often awake for an hour or more in the middle of the night.

I admit that it's getting old. But we've accepted that its' where we are right now.  We're not quite ready to take the steps that we'd need to to change things.  We're just keeping our fingers crossed that she grows out of it. I swear my fingers may just get stuck like this.

Over a year old, but a familiar face at night, nonetheless.

Wednesday, October 17, 2012

"The Country of Normal"- A Guest Post - 31 for 21

I have had the absolute pleasure of meeting some incredible people since Cora arrived in our lives.  I've forged relationships with families on my online Babycenter forum, in the blogs that I follow, and even in person here in our local Down syndrome community.

One of my very favorite families is the Carsons.  We met Susan, Paul and Anthony when Cora was about 10 weeks old, after meeting Susan on an online message board.  We have had the chance to spend time on several occasions with their beautiful family, although not nearly as often as we'd like.

Susan and Paul are a blast.  Fun, energetic and positive and they have such great perspective on their lives with their gorgeous boy, Anthony, who is almost 2 years older than Cora.

Anthony's dad Paul is pretty inspirational to me.  For the most part it's the mothers who are the visible outspoken participants in our Down syndrome community, while so many fathers quietly offer support from the sidelines.  But not so with Paul.  I learned that he is a wonderful speaker when I had the opportunity to hear him tell Anthony's story at one of the NWDSA presentations last spring.  He is hilarious and warm and loves his boy so, so well.  Just one look at the two of them together and you know that their bond is special, indeed.

I love hearing about the adventures of their family, reading Susan's perspective on their life, and seeing the ridiculously adorable pictures of Anthony at Susan's blog, Keeping Up With The Carsons.

Yesterday's post (a story written by Paul) was remarkable, so I asked them if I could share it here.  Susan and Paul have graciously allowed me to share it with you.
 “The Country of Normal”
 (a fable by Anthony's Dad)

If you travel, there’s a country you may have visited called Normal. You may even live there. Normal has a bit of an overpopulation problem – it seems that everybody wants to live there. The folks who live in Normal tend to talk the same way, dress the same way and its citizens are encouraged to paint between the lines and do their best to fit in.

Every now and then, someone will be born in Normal who’s a little different.

For some reason, these different folks seemed to scare the inhabitants of Normal. If you were different, you would find that you’d been asked to leave the country and that your citizenship in Normal had been revoked.

The Governor of Normal wanted everyone to feel safe. “When things are different, folks aren’t sure what to expect and that scares ‘em!” he explained, “Birds of a feather!”

First, the Governor began to worry about people who’d been born someplace else: “They’re originally from a different country – they talk funny and believe in a different book about a different God! That scares folks and makes ‘em doubt things! If other folks believe something different, that could mean that there’s a chance that what I believe could be wrong.”

Then, the Governor decided everyone whose skin happened to be a different color should be asked to leave – because that probably was a good sign they were originally from someplace else anyway.

The Governor felt that things still weren’t Normal enough. So everyone who happened to have been born with an extra chromosome was told they had to go someplace else. “We all like to do things at the same fast speed here in Normal, and, well, you just aren’t fast enough…”

 Then it was time to deal with people whose intimate relationships were different – “Having two mommies or two daddies isn’t the Normal way,” said the Governor. “Those kinds of relationships threaten our Normal relationships.” The Governor couldn’t really explain why that was, but everyone agreed it was probably for the best.

He was making progress, but things still weren’t Normal enough. There were all these Heavy-set people who just didn’t fit in. They would have to go – they were eating all the food. Then there were the really old people – and the young people with the uncertain new ideas. It seemed the more the Governor looked for people who didn’t belong, the more of them he found.

One day the Governor overslept and when he woke up he realized he was out of coffee. So he decided to walk to the store to get some – but the store was closed. He remembered it had been run by someone who had been born someplace else. He continued down the street and realized that all the other stores were closed as well. They’d been owned by fat people or gay people or slower people – they’d all moved away. The Governor had wandered all the way to the farthest fence near the border, and he realized he was all alone – he was the last one left. He dropped to his knees and without really knowing why, he began to cry. “What have I done? I never thought I’d be all alone – this isn’t what I wanted!” he cried.
Suddenly a voice called out to him from beyond the fence, over on the other side. It was a little girl. Her skin was darker than his and he could tell by looking at her that she’d been born with an extra chromosome – that she was different. “Don’t cry, mister. You don’t have to be alone – we have room for you over here."

She opened up the gate and she took his hand. Here were all the people who’d left – all of them – and they were living together. Everyone seemed happy – and there were so many differences, all mixed together, it was impossible to tell who was who. Funny how it didn’t seem to matter anymore.

“You’re so kind to take me in,” he said. “What is this place?”

“We call it the Country without Fear,” she replied. “That’s the only thing that can’t live here.”

You can read the original post here at  Keeping Up With The Carsons- The Country of Normal and become a follower of Susan's blog.

For more from Paul, check out his contribution to the December 2011 NWDSA newsletter, "You're a hero to somebody- clown shoes optional."  (Page 5)

Tuesday, October 16, 2012

The Comparison Game - 31 for 21

One of the first things I learned after Cora was born was that she would learn to do most things, but would do many of them later than other children. I felt relieved. I figured I could be patient.

I thought that having that little “permission slip” for milestones to occur later meant that I could relax and not worry so much about her progress.  I thought I could take myself out of the usual parents’ comparison games and avoid all the drama and ego.

But it didn’t quite work that way.  I think at first I was in denial about her delays.  By six months old, Cora’s pediatrician said that she was largely on track.  That made me hopeful that she would develop faster than expected.  But she hadn’t really been rolling over much.  And then, when she would something, she’d do it, then stop.  I soon learned that this was Cora’s pattern.  Everyone was telling me she would “do it so soon…” but nope.  “Soon” has been a word that we have learned not to throw around easily.  Take crawling. We so wanted her to crawl.  We built a crawling track and used it all the time.  Her therapists were sure 4-point crawling was right around the corner when she started army crawling.  But then after her long-drawn out T&A recovery she stopped altogether.  And to date, at 21 months old, she’s never really crawled.

Although not comparing her to others her age seemed the best and fairest way to go about it, I was still faced with Cora’s built-in milestone guide, also known as her cousin Kai.

It just so happens that Cora’s only cousin is just 4 days older than she is.

At the beginning, the differences between Cora and Kai were obvious.  He was growing and thriving. She was struggling to eat at all and had a feeding tube.  Kai spent his newborn days snuggled up against the Vermont cold after a beautiful waterbirth, while Cora spent hers under the lights of a NICU as I camped out by her bed after a difficult birth and a shocking diagnosis. 

After Cora’s heart surgery, things evened out for a bit.  The two cousins finally met at four months old, at which time they were both tiny, squirmy nursing babies without significant differences in their skillsets, except that Kai was already jumping around in a jumper.

At almost six months, Kai was learning to sit up independently, while floppy little Cora sat propped up in laps.

Then again at almost a year, Kai was crawling all over the place and learning to walk while Cora was fighting tummy time and reluctantly army crawling short distances.

1 year old!

15 months old

At times, seeing the gap between them has been a little difficult.  Even when I take my own emotions out of it, sometimes it's hard to not feel that Cora is missing out on important developmental activities due to her delays.

At this time, the differences are pretty obvious.  I swear that Kai will be graduating college in a few years at this rate.  He is so articulate and smart and energetic, and like his peers, is able to run and climb and get into all kinds of things that Cora hasn't begun to discover.

But as much as you can’t help but see their differences, I don’t actively compare the two of them any longer. 

Perhaps part of it is getting more comfortable with where Cora is and watching her develop her own unique strengths.  And part of it is also that as I’ve grown to know and love Kai more I can't help but just see him for who is is, rather than as a measuring stick for her.

I see them as Cora and Kai, two beautiful children that I adore.

Sometimes I still feel those twinges, like when I see a 6-month old do things that Cora is just learning to do.  But the moments of comparison and sadness about it are getting less frequent.  They tend to hit me when I’m feeling emotional or depressed.  And they seldom occur when I am with Cora.

With her in my arms, or tucked in my lap (safely away from the “threat” of other toddlers), it’s hard to feel sad about her differences.  When I watch her interact with the world, read her books, communicate with her many signs, or play with me, her differences aren't what I see.  I see her beauty and her charm, her gumption and her sass.  I see my girl.

Monday, October 15, 2012

Do you Celebrate? 31 for 21

A few days ago a question was posed on one of my online parent forums.

The question was, "Do you celebrate Down syndrome or just celebrate your child?"

It's an interesting question.  I know a number of people who love their children with DS, but don't love Down syndrome.  People that aren't really ready to celebrate the presence of DS in their lives.   (For beautiful and poignant words on this, read this post by Gillian Marchenko.)

It's true that Down syndrome comes with challenges.  Some of these concerns can be significant: medical and developmental concerns, concerns about inclusion and acceptance, prejudice and "ableism", and each parent's individual process of coming to terms with their child's diagnosis.

Most people don't wish for their unborn child to have Down syndrome.  Many, if not most of us experienced grief and disappointment when we learned of our child's diagnosis.  And we're all in different places in our feelings about it.  Even for parents who feel that they've moved past that grief, sometimes it still bubbles up, surprising us.

No, I don't think about it all the time.  No, I don't always look at her and see it.  Of course so much of the time she is just Cora to me.  But I guess I am early enough into parenting her that I still think about it a lot.  There always seems to be something that we are working on, or working through, or trying to accomplish or resolve that is affected by the fact that she has DS.

Because I don't have any other children, I don't really have the perspective to know how much DS affects my parenting and my feelings.  I don't have the experience to know how much of my feelings come from simply being a parent or whether they are because I am a parent to a child with DS.  I can't tell you that parenting Cora is not much different than parenting my other children.  In fact, when we consider the idea of having more children, I admit that the idea of having a child without a disability seems like a foreign and even intimidating prospect.  I feel like my perspective has been so shaped shaped by the fact that Cora has DS that I can't envision parenting without it.

But as Cora's parent, I am in love with Cora, Down syndrome included.  I don't love her in spite of DS and I don't love her because of DS. 

I just love her.  

Down syndrome is a part of her, in each and every tiny little cell.  It affects many aspects of her life, and in turns, affects my life, as well.

It is part of what makes her who she is.  I can't imagine the idea of seeing her without it, because then she wouldn't be her.  So, when it comes down to it, that means that I love DS.  Would I take it away if I could?  I don't think so.  I'd consider taking away some of the challenges, the heartache, the health concerns, sure.  And I do still have my own moments of sadness here and there.  But would I take away something that is so much a part of her?  Especially since I have truly come to appreciate so many individuals with DS?

Whether it's a stereotype or not, I definitely find something valuable and important in people with DS, and I have learned to celebrate it. 

As one of my favorite blogging friends, Meriah at With a Little Moxie has written, "And that is perhaps the best gift – the most unique gift – that people with Down syndrome bring: gifts from their heart that have the potential to make the world captivating, caring, delightful. Exquisitely unique."  (Check our Meriah's published article in Parents or read her blog for more of her insights.)

I celebrate our community, and my incredible group of friends, online and in our local community.  I celebrate this life-changing, inspirational thing that has entered my life.

So yes, I'd say that I celebrate having Down syndrome in our lives, even if it's not always black or white.

What do you think?  Do you celebrate DS?

Sunday, October 14, 2012

Gloomy - 31 for 21

Fall finally feels like it's arrived here in Portland.  Although the leaves have been changing for weeks now and the days have had that golden autumn glow, the temperatures have been warm and the skies have been blue. 

It's easy to be in a good mood when the days are like that around here.  That rare, fifth season that we too seldom get to see in the Pacific Northwest.  Lovely.

But yesterday the clouds rolled in and the rain started.  And somehow, with the arrival of the gray and the gloom my mood has decided to follow suit.

I'm not sure if Cora is finding my mood contagious or if I am reflecting hers, but she's a whiny, grumpy mess today, and I've been feeling less than patient.  I'm tempted just to whine along with her.  Even an early lunch out together at Whole Foods found me packing my salad to go while she threw everything I gave her on the floor, whining all the way. 

Always happy?  Nope.

But thankfully, I did have my one moment of bliss, when we took Cora swimming today.  Watching her speed around the fast-moving "river" with Daddy, shouting with joy, her arms in the air, again and again had me laughing out loud!  She had a ball in the water.

Now that we're back home, she's pulling on my leg, begging to type for me, griping away.  Guess I ought to go entertain her, although my low energy reserves won't allow for too much enthusiasm at the moment.

Off to make something warm as I watch the wind and the clouds outside. Hopefully tomorrow will bring new inspiration or at least an attitude adjustment.

In the meantime, I'll share a photo from a couple of days ago when the sun was shining bright.

Saturday, October 13, 2012

21 Things - 31 for 21

In honor of 31 for 21, today I want to share 21 things about Cora that you may not know.

(The number 21 is significant since individuals with Down syndrome or Trisomy 21, have 3 copies of the 21st chromosomes in all their cells.)

Who?  Me?

1.  Today she turns 21 months old, and weighs exactly 21 pounds. No, we didn't plan that.

2.   She loves ice cream, but spits out cookies and cake.

3.   She loves to get up on one knee and scoot around, but acts like you're torturing her if you try to get her on both knees.

4.   She doesn't like to touch grass. If you put her on the ground outside she lifts her legs up and makes an "icky" face.

5.   She likes to roll the ball away from you. She thinks it's funny and laughs if you go chase it.

6.   She could seriously live off greek yogurt. Oh, and breast milk.

7.   She loves to read. She could read all day long. She has favorite books that she constantly pushes across the floor to me and her very favorite is the sea lion in her Baby Animal book. She immediately turns to that page and makes a strange garbled noise. Must be her sea lion impression.

8.   She started to take her first cruising steps in the pool and is now reluctantly cruising on the couch and around the house with a lot of support.

9.   She surprises me almost daily with the signs she knows. Right now there are about 75 that I know of, and I swear she's using signs that I don't recognize all the time. She signs what she hears us say in conversation constantly.

10.  She loves to wrestle: climbing up on you, throwing herself down, playing peekaboo and howling with laughter.

11.  I think she'd do anything for Signing Time. She recently showed me that she could sign "time", even though I never directly taught her this. Now she asks for Signing Time throughout the day.

12.   She gives some amazing hugs and kisses, resting her head on your shoulder. Sometimes she'll give a lippy kiss, but at other times she pushes her forehead into your mouth so you can kiss her.  Why, thank you, Your Majesty!

13.   She has a musical soul. She loves to dance and sing, and can't get enough singing songs together, especially if it has signs or hand motions. She's building a collection of instruments that we play with (although she's currently finding it very funny to throw them.)

14.   When she wants something, she'll give you her cute looks.  And boy are they effective.  She'll tilt her head to one side and look at you sideways, or she'll put her head back in the air and scrunch up her face, inviting little neck kisses. It's hilarious and irresistible.

15.   She can't make up her mind about our cats. Lately she's been going after them more, and will tickle them, pet them, poke their ears and pull their tails. But she gets upset with them too, and often pushes them away.

16.   She is a ham in the grocery cart, laughing and waving at her admirers as they go.   But get her in a group of people and she becomes a shy little wallflower who needs time to warm up.

17.   She is cultivating her stubborn streak and had her very first time out this week, after repeatedly grabbing at my glasses despite being told "no." She was not a fan.

18.   She loves to hide her toys and books. We're always pulling them out from under the couches and the chairs.

19.   She loves soft tickles.  When I am putting her down for a nap I soft tickle her legs and feet.  If I'm not doing it exactly right, she takes my hand and moves it around all the right places.

20.   She is afraid of most children.

21.  Although her nickname is Cora Bean or Beanie, she has a significant allergy to beans, peas, and soy.  Oh, the irony.

To see how far my Beanie Girl has come in the last year, check out 21 Things About Cora one year ago.

Friday, October 12, 2012

Catching Souls - 31 for 21

"Joy is a net of love by which you can catch souls."  
                                                                                                                 Mother Teresa

Thursday, October 11, 2012

Written on Your Face - 31 for 21

My best friend worked at a day camp a few years ago.  Thinking back, I remember her telling me about a couple of her favorite kids.  After Cora was born she talked more about them.  About their wacky, silly sense of humor, their enthusiasm and how much about them stuck with her over the years.

Oh yeah.  They had Down syndrome.

She told me that she had a conversation with one of the boys when he told her how it was hard to be judged by the way you look.

I know that is a concern that many parents like me share.  That our children will be judged by the differences written on their faces before they have made an impression as individuals.

I'm sure it will happen a lot.  And as much as I hate thinking about it, the thought of Cora feeling that way about herself breaks my heart a little.

One could argue that having a disability (for lack of a better word) that is recognized by physical characteristics alone could have some benefits.  Perhaps people will have more patience or understanding upon recognizing her difference.  Maybe they will postpone judging.

But some will definitely judge faster based on what they see.  Because the familiar characteristics of Down syndrome are definitely visible; like a brand, in a way.  With that brand comes a lot of expectations, most of them low.

What you can't see in someone's facial features, though, are their talents, their gifts or the way they can shatter expectations.  Expectations are rising all the time and people with DS are rising to meet them wherever you look.

From where I stand now, which is admittedly pretty early on in my intimate consideration of disability, the best way to gradually start to diminish the judgments has to be exposure.  It starts in our communities, in our baby groups, and story times and baby signing classes.  And it's critical in our schools.

As incredible as we know inclusion is for our children with disabilities, it's also so important for all the other children.  Important for those small children to sit side-by-side with their peers with Down syndrome and autism and other differently-abled individuals.  Important for them to have the opportunities to know people like Cora and to start to remove that insipid fear of the unknown.

I wish I would have had the chance to grow up in a community and in schools like that.  I wish that it didn't take Cora's birth to make me realize that awareness, acceptance and support is so critical to all of us.  But I am here now.  And now I can do my little part to make sure that Cora is seen, that she is heard, that she is a part of her community.

I can't remove judgment from people's minds and hearts.  I can't erase the fact that her diagnosis is written on her face.  But I can continue to advocate for her, to give her the best opportunities I can and to help ensure that she is included; for the good of her and for the good of our society.

Wednesday, October 10, 2012

Love - 31 for 21

Baby's first grins, first giggles, first dance moves, first words (or signs), first steps.  There are so many firsts that make your heart skip a beat.

Cora's first time telling me "I love you" took the cake.   

It didn't take quite the form that you might expect. Because my girl is a bit of a stinker with a tendency to take shortcuts when things are a little too much work. Yeah, she's clever like that.

During some shared cuddles and giggles, I leaned in to her and told her, "I love you," like I so often do. I held up my hand in a sign, like I always do.
I love you

I've seen Cora try to do this sign before. She holds up her pudgy little hand and looks at it, plays with her fingers, and then holds up her hand, wiggling just a bit. She's tried to imitate for sure, but hasn't quite gotten there yet.

But this time, she grabbed my hand, and turned it around, so that my "I love you" sign was facing me.

Then she grinned. A little stunned, I asked her, "Cora loves Mama?" to which she replied with her biggest "yes" smile; the one she uses when I've deciphered her communication code.

It was her answer to my declaration. Our own little mama-daughter conversation. And I melted into a little puddle of wonder and love. 

Tuesday, October 9, 2012

The Strongest Thread - 31 for 21

When I reflect on my life with Cora, I mentally divide it into three distinct parts.  The first part encompasses her birth, her diagnosis, the NICU stay, heart failure and the petrifying waiting, waiting, waiting for heart surgery to be complete and for life to really begin.

I think of the second phase like the honeymoon.  Surgery was a success, my girlie could breathe, and eat and be and my fear had just been lifted away.  It felt miraculous, glorious.  Like nothing could go wrong.  Despite lack of sleep and concerns that may have still seemed daunting to many, it was pure euphoric bliss. 

The third phase seemed to gradually sift into place, little by little.  It probably started once sleep deprivation began to really wear me down and my crazy hormones started to even out.  It’s then that I started to feel more like a typical parent.  I was finally stressed by typical things.  I was worried about development and whether I was doing enough.  I was exhausted and worn out and finally reeling from the life-changing roller coaster I’d just been on.

My introduction to parenthood has been different than that of most of my friends and family.  Everything seemed so big at the beginning that it took a while for the usual day-to-day difficulties of life as a new parent to sink in.  It was probably close to the end of her first year before I really started to feel that aspect of parenting up close and personal.  Then I could actually join in conversations with the moms at playgroups and story times and relate, rather than finding commonality only in my online Down syndrome groups and blogs and with a handful of families in our local Ds community.

At this point, as we move closer to her second birthday, I am appreciating the perspective that time is bringing.  I can look back and acknowledge how paralyzing and emotionally wrenching those first few months were.  I see now that I was living in a raw survival mode, my love for Cora the only thing propelling me forward.  Feeling the precariousness of your child’s life is a surefire way to show you the strength of that love.  It shows you just how strong you are too, even though I didn’t feel that way at the time.  All the time that my “strength” was being praised by others, I felt like an imposter: weak, frail, and brittle, like I was held together by only a thread.   It just so happens that it was the thread linking me to Cora, and that thread is indeed strong.

And as any parent knows, that thread, that love, shockingly continues to grow.  It’s no longer paralyzing and intense all the time.  It’s no longer constant euphoric bliss.  In truth, it can be a little of both those things, all the while interspersed with the joy and annoyance and worries that are life. 

Sometimes Down syndrome makes me feel very different from many of my peers.  Sometimes I feel like our life is very different and our concerns are very different.  But thankfully I don’t feel that way all the time and thankfully I am in very good company.

My perspective of not quite two years in is still fresh, I know, even if sometimes it already feels like a lifetime.  I look forward to seeing this thread lengthen and grow stronger.