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.

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.

Catching Souls - 31 for 21

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

                                                                                                                 Mother Teresa

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.

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. 

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.  

Attitude... Who me? 31 for 21

Shhhhh.  Don't tell Mama I got to the computer.  She doesn't like it when I type on her laptop.  I'm not sure why.  I guess she doesn't like to share. 

Oh yeah.  This is Cora if you haven't guessed.

I have just a few things I want to say and I don't want Mama to know, cause it's kind of about her.  Well, about what she says about me, anyway.

Mama has been saying that I have something called "attitude."

Yeah, I know what that means.  What I want to know is why is she surprised?  I'm pretty sure she and Daddy both have "attitude" too.  I've also heard her whisper the word "stubborn" a few times.  Like I can't hear a whisper.  Didn't the audiologist tell her my hearing is great?

She's also been saying that I have entered toddlerhood.  Well, yeah!  I'm almost 2, you know.  Some people may not think I'm a toddler since I don't walk yet.  But that has nothing to do with it.

So yeah, I know that lately I have been expressing myself a little better.  So I don't like it when Mama puts on my bib... or my socks and shoes...  or changes my diaper and puts on my clothes....

So I am a little quick to cry or yell when she walks away from me....  And yeah, maybe I don't like to do the things that she asks me to, even though I can understand her and I used to do them all the time when she asked.   Like I said, what do you expect?

I know that some people think people with Down syndrome are always happy.  And I am happy a lot.  But sometimes I'm not.  And I am learning to let people know that.  Especially Mama.

But sometimes it's pretty funny, when I hear her telling other people (like Grammie for example) about me not being a perfect angel all the time.  I don't think Grammie believes her.  Because when I'm around other people I am pretty great.  That way they think Mama's just telling stories.  He hee!

Uh oh!  I hear Mama coming back to see what I'm doing.  I better go read my favorite book for a minute.  Maybe I should try not to be so quiet so she doesn't get suspicious.  Yeah, that's a good idea.

Okay, it looks like she's going to come play with me now.  So I'd better get going.  But just make sure that you remember about me and this thing called "attitude."  I like the sound of it.  I think I'm going to work this "attitude" thing a little more.  Oh, and please don't tell Mama about me using her computer.

It'll be our secret, okay?

This is me looking like a perfect angel.  But I think maybe Mama can see the "attitude" in my eyes...