My Favorite Super Hero- 31 for 21

Well, 31 for 21 has come to an end.  Down Syndrome Awareness Month has only a few short hours left in it.

I realize that many of my posts don't have much to do with Down syndrome.  It is something that is a part of our lives, yes, and it affects many things.  But it is certainly not the biggest thing.

Down syndrome awareness is a good step.  You have to first be aware to begin the step that is most important: acceptance.

There is still a long way to go, but I have a lot of hope.  There are many people working hard to get there every day and are helping pave the path that my daughter will be walking.  We are a part of it, and you can be a part of it too.


But it is Halloween, after all, so I can't sign off without sharing a few photos of my sugar loving girl on her first happy Halloween.  In the past she's been dressed up and taken to parties where she mostly just cried.  But today, she got to eat her first Halloween candy (poor deprived little girl.)  And she mostly put up with us taking her trick-or-treating to a few houses in our neighborhood.  (Although she did yell and scream when I gave candy to the kids that came to our door.  She did not want me to share "her" candy.)

I give you the Silly Signer.  Yes, it is our made-up super hero.  Or super villain, depending on her mood.

Humoring me.

The Silly Signer is off!

We told her that trick or treating involves candy, so she's pretty excited.

The pumpkins next door.  Cora loved them.

Feeling a little nervous outside with all the kids running around.

She needed me to carry her to the doors.

You can't see it, but she's grabbing a handful of Skittles. And showing off her "I love you" cape.

The Silly Signer strikes again!  Here she is running off with the Skittles.

 

Running away from me because she thought I was going to take away her candy.

Happy Halloween!

Making Big Strides- 31 for 21

When it comes to life with Cora, you really get to practice patience.

Although I can often see her making steady progress in some areas, it is often painfully slow.  It's not uncommon to find that it can take her a year or more to master learning to do something that most children do in a month or two.  So we have learned to appreciate the little accomplishments, the small baby steps that gradually add up.

Right now, though, it seems like she's making some incredible progress in several areas.  It's really exciting to see.

Probably the most obvious development is in walking.  Since I came back after my weekend away from her, she is suddenly walking around a lot more.  Probably more than half the time while she's in the house.  When we're outside, I still hold her hand much of the time, since it's much harder to walk on uneven surfaces.  But she is getting there, and it is an exciting thing to behold.  She's also been climbing like crazy.  Just this morning, I turned around to find her sitting in her high chair trying to buckle herself in.  Yikes.

And then there's speech.  Communication has always been a strength for Cora, but speech has been fairly difficult.  Although she has a large receptive and signing vocabulary, she has a hard time making the specific sounds needed to form spoken words.  She started saying recognizable words shortly after turning one, and although she says quite a number of words, her articulation hadn't improved much until recently.  Now she is learning to pronounce a couple of ending consonants, like "cute" and "up."  She is starting to figure out diphthongs, like in "hi," and "bye," and many of her words are starting to sound a little clearer.  It's still a slow process, but it's been wonderful to see.

She is even improving her fine motor skills.  In addition to feeding herself pretty well, she can now put on her socks, pants (most of the way up), and sometimes get on her shoes and shirt.  She loves to help cook and clean, and definitely seems to have the "clean gene" that only certain people in my family are blessed with.

During pumpkin carving last night she was thrilled.  She drew on her pumpkin, helped scoop out the seeds, put the lid off and on, and played shape sorter with the shapes that Nick helped her cut out.  It was pretty fun for me to see her actually get excited about carving her own pumpkin. 

The glee on her face when she saw the jack-o-lanterns lit on the front porch was pretty cute, indeed, and she loved showing her pumpkin off to her Early Intervention teachers this morning.

It's pretty exciting to see this explosion of learning and development.  She seems proud of the fact that she is able to do more and more all by herself.  And, even though I feel a little wistful watching her grow up, it feels good to know that even though she is taking her time, she is getting there.

The Missing Pieces- 31 for 21

This is another recycled post from just after Mother's Day earlier this year.

I've been thinking a lot about all the mothers in my life: particularly my own amazing mom and my sisters.  I send this out to them.

This Mother's Day weekend our little trio took a whirlwind trip to the beautiful Oregon Coast.  There's just something about the ocean. Something cleansing, something that somehow sweeps the cobwebs from my heart and inspires me.
 

We played on the beach, watched Cora point out the birds and dogs, roll around in (and periodically taste) the sand, and then grab our hands and "run" straight for the water again and again.  We laughed and played and had a great time.

This morning I took a solo walk on the beach, the air crisp and the wind blowing, the clouds filling the sky in a way that felt just like home.

Alone is not something I get to do much of, and it's something that feeds me.  It's something I have always needed, and something that I was afraid would change too much after I became a mother.   I walked the sand toward the craggy rocks, breathing the cool salt air, setting goals to work more "me" time into my life, and thinking of how much becoming a mother has transformed me.

A few weeks ago while watching a drama on TV, a scene where a mother's adult son passed away had me in almost a panic.  I could feel her anguish.  I could see Cora on that table, and the pain was unbearable. In that moment, for just a few seconds, I thought that if I could do it all over again there was no way I could handle it.  I felt that being a mother opened up way too much possibility for anguish; that the mere idea of losing Cora hurt so much that never becoming a mother sounded like a better alternative to that possibility.

According to my husband, Don Juan, sorceror and mentor to Carlos Castenada told of "seeing" peoples' souls.  He talked of being able to immediately identify parents, because they were inevitably missing parts of their selves; holes in their centers that their children had removed.

And it rings so true.  Apart from how much motherhood has redefined my days and my values and my perspectives, it is truly like Cora has taken a piece of my soul, one that I couldn't get back if I tried.  Losing a part of oneself like that is terrifying, yet is still the most exquisitely beautiful thing I have ever done. And so it is for us, as mothers. We live our lives, so changed... tethered to the souls that are parts of us, that have taken pieces of our selves, whether these lives are with us or not.

It's with those thoughts that I snuggled Cora in my arms tonight, and read her book after book after book.  Sometimes the days are hard, the struggles frustrating, the experience lonely.  But oh how I love this little child who has stolen my heart.

In Her Own Words- A Guest Post by Cora's Grandma- 31 for 21

Today's post is special, indeed, because it was written by one of the most important people in my life: my mom.  I will let her words speak for themselves. Written by Melanie Thompson.

Thank you to Leah for asking me to be a guest contributor on her blog today in honor of Down Syndrome Awareness Month.  First I want to say how very much I love October because I get to hear about my darling and her exploits every day.  And Cora is indeed my darling.  I just can’t imagine thinking about her in any other terms.   

I am so grateful on so many levels that I have Cora in my life.  She sweeps me off my feet with her sweet personality and winning smile.  She makes me laugh with her funny little jokes that are actually quite clever.  I love to watch as she hams it up with her extended family looking on and applauding while she beams knowing she is the cause of their merriment.   Even on those ornery days, I can’t help but smile and think how wonderful it is that she is here and is such a big part of me.  I’ve come a long way since the day I heard her diagnosis and felt so sad that Leah and Nick were now burdened with such a child instead of the lovely and intelligent one they had every right to expect.  Thankfully, I have learned that Cora actually IS the lovely and intelligent child they expected.  I always considered myself to be an open-minded person with not a bit of prejudice in my soul.  Alas, I know now that was not the case, but I do believe that has changed.  If not for Cora, I would still be, albeit unknowingly, stuck in a mindset that placed her and people like her in a category that is biased and inherently unjustified. I thought people like Cora were not smart.  (She shames me with her intelligence.)  I thought people like Cora couldn’t learn.  (She currently has an over 600 word signing vocabulary and continually astounds me with what she knows and understands.) I thought people like her were destined to be a burden on their families. (She could not be more loved, cherished and welcomed than she is.)  I didn’t even consider that people like Cora could be artistic. (She loves to sing and makes up her own songs and remembers and repeats them later.)  She is quite the sweet, loving, clever and talented girl.

You can tell by now, I’m sure, how very impressed I am by this charming little girl.  I am so looking forward to watching her grow up to be a lovely young woman as she continues to learn who she is and how she will affect the world.   And she will affect the world.  Even if it is only her little corner of it, this is a better world for having Cora in it. 

Home Again- 31 for 21

I am home again after my three day mini child-free vacation, feeling like I am getting this post in just under the wire.

Getting away and spending time without my usual two-year-old accessory felt oddly comfortable.  I missed her, but it didn't hurt to be away.  It was lovely, actually, not to be chasing her around and keeping her out of everything, but instead to be spending quiet time with my sister, her husband and their beautiful new girl, Carys.  My mom joined us at the end, which made it all the more fun.  We laughed, we cried, we snuggled a lovely new girlie, and we talked as three women who are now joined by the crazy and life-changing experience of being mothers. 

It felt like home, really.  And sometimes I just miss that time... the time to focus on myself and some of the other people that I care most about.  That kind of time is not always easy to come by as a parent, but when it comes, you realize just how necessary it is.

And just because this little girl is so very precious, here are some of my favorite pictures from the weekend.

As lovely as it was to get away, coming home to Cora was pretty fun, indeed.  I swear, she looks older and talks more.  How could that be?  I may miss my new niece and my family, but it's nice to come home to Cora's smile.

That Smile is Contagious- 31 for 21

I'm still with my sister and her baby, snuggling up and enjoying the calm world of life without a toddler.

But I can't resist a look at Cora 2 years ago.  How did she get so flipping cute?

Happy Saturday!

My New Love- 31 for 21

This weekend has been quite the milestone for my girlie and me.

It is our first separation for more than a few short hours.  I got a little panicky in the hours before leaving, but once I was on the road that feeling mostly subsided.  I think I am having a little easier time with the transition than Miss Cora is.

Perhaps I should feel guilty, but I've been having an awfully nice time.

While Cora is at home, hanging out with her Daddy and my friend Christine, I imagine she is doing something like this.  Or putting on her socks, taking them off, then putting them on again.  Or hanging out in the swing. 

Playing with her baby.

Singing and signing to her baby.

But I am the lucky one, because even though I am missing my girl, I am getting some good time with these two beautiful girls.

 

My baby sister Mira now has a baby of her own.  Sweet little Carys Saige is perfection in the cutest little package.  I am soaking up every minute of the cuddles and coos of my newest little love.

Another 48 hours and I'll be leaving these two behind to go tell Cora all about her newest baby cousin.  What a lucky girl I am.

Bringing Back Music- 31 for 21

Lately I've been listening to music more than I have in the last 10 years.  I'm not exactly sure why, but as my life got busier and more chaotic, gradually I found myself turning music off, perhaps confusing my coveted moments of silence for calm. 

But I've got my pint-sized music lover to thank for bringing back the songs.

Cora can't get enough music.  I love seeing her dance with her getting-my-groove-on face, complete with pursed lips, head a-boppin' and arms waving in the air.  We regularly pull out her box of instruments and bop around the living room, singing and dancing ourselves into silly fits of laughter.

Grooving to Tallulah's Daddy's music.

And beyond pure enjoyment, music seems to smooth out the edges for Cora.  It helps us get through our daily routines.  My little girl does not like self-care activities, like changing, getting dressed, getting groomed, getting in her high-chair/car-seat, or even eating meals a lot of the time.  But music seems to ease her frustration with those activities.  Whether we're streaming Raffi radio on Pandora or listening to something I've chosen, everything goes smoother when there is music involved.  And my picky little eater will often feed herself a whole meal if I turn on some tunes.

One of her very favorite activities is going to hear a live music show with her favorite kid's musician, Tallulah's Daddy.  Over the past year and a half or so we've been going to hear his shows as often as we can.  Cora loves his songs, his engaging demeanor, his daughter Tallulah, his ability to play multiple instruments (sometimes at the same time) and the chance to play instruments during the second half of his set.  I love the fact that he makes music accessible for everyone and really believes that everyone has the ability to make music.  And I am happy that our family has begun to consider his family friends.

So happy to be listening to Tallulah's Daddy sing!

With Cora in my life, I am learning how lovely it is to have a soundtrack smoothing out my days.  And I am so happy to see that she has such a musical little soul.

She's Obsessed- 31 for 21

Lately you want to live in the swing.

Every day, you get up and sign "swing," even before you've had breakfast.  I can't even think about getting you into the car without planning at least 20 minutes of swing time beforehand, because, you know, the car is on the way to the swing.

And forget about playing in the front yard anymore.  Or riding your bike, or going on walks, or waiting on the front porch for Daddy to get home from work.

It's the swing or nothing.

And my, do you like to move.  I can't believe how long you want to be spun in circles, swinging back and forth, around and around.  How high, how fast.

And it certainly brings something out of you.  You jabber, you sign, you make up your own songs. I'm pretty sure that much of the time you're not singing one that I've taught you, since the signs just don't match up.  Today I watched you sign "baby," "tree," "cracker," and "wind" in fast succession, while you crooned your sweet swinging song, your legs kicking back and forth.  "Beeeee, daaaaa, beeeee, wooooowwww."

It's so funny to me, and so sweet to watch you fly across the yard, as you open yourself up to the music inside you.

Although, heaven forbid I do it wrong (what that entails seems to shift), or spin you too fast, or answer a phone call, or walk away for half a second.  You know how you like it and you're not afraid to let me know.

I've been loving our swinging days.  I wonder, if, when the weather turns cold and the rains return, if you'll still want to spend your hours out there in the swing.  Last year you were not a fan of cold weather, and I hope that this year things have shifted a bit.

My silly, swing-loving girl.

Fall Days- 31 for 21

After the heavy rains of a few weeks ago, it felt like the Northwestern winter was here to stay with rain, rain and more rain.

But oh so happily, we have been gifted a string of gorgeous fall days, with bright blue skies, crisp mornings and surprisingly warm afternoons.

We've been taking Cora to the parks again, letting her kick through leaves, "run" from tree to tree, dig in the bark with sticks, and even going to an apple festival for some apple-tasting fun.  Although the lines were too long for us to wait for tastings, we saw some great music, bought some apples, and giddily watched Cora walk around the whole place.

She would usually hold one of our hands, or walk in between us, each of us taking one of her hands.  But just to see that she had the stamina, the ability and the interest!  It was pretty exciting.  The world is a new and glorious place when you can see it up close and personal and walk where you choose to, rather than being toted around in someone's arms or in a stroller.

She colored, picked out a pumpkin, looked at a lot of different apples, and bopped around to some tunes.  

She's getting quite a new perspective on life lately.

As much as I've always loved the rain, it is less enjoyable with a small one to wrangle.  So I am trying to soak up every minute of these gorgeous days, knowing all too well that they are way too fleeting.

Blog Hop- 31 for 21

3 on the 21st- A Down Syndrome Blog Hop
 
A truth.

My child is smart.  And she has Down syndrome.  And there is nothing contradictory about that.  She may do many things slowly and she may not yet use a lot of words, but she impresses me all the time with her ability to learn, communicate, and to show us how very capable she is. She is constantly teaching me  not to underestimate her.

A tip.

Making messes is a great way to learn.  Letting your kids play in leaves and dirt, spill flour all over the floor while helping you cook, and empty the drawers of all the Tupperware and lids may make way more work for you, but it makes for a really great way to learn about the world, to learn real-life skills.  And it makes things way more fun. Let your kids get messy a little more often than you think you have the patience for.  Then have them help clean it up. 

A photo (of the cutest girl in the world... and she knows it.)

A Good Cry- 31 for 21

Today I am sharing a post I first wrote when Cora was almost a year old, as I reflected on my conflicting emotions.

But what I began to learn to come to terms with then, is that feelings are seldom black or white.   That day I began to accept my occasional fear and sadness as part of me, and to realize that those feelings do not diminish the love I have for my child.  And that was an important lesson to learn.

A few days ago, driving in my car, switching radio stations to find songs that suit my mood, I heard a woman on the radio give her story of the day.  I'd heard her stories a few times before.  Always a little sappy, a little sweet, a little heartwarming.  Sometimes you'd roll your eyes just a little.

She started telling a story of a little boy at a pet store looking at puppies.  When the boy saw a puppy with a limp, he told the shopkeeper he wanted to buy that puppy.  The shopkeeper tried to talk the boy out of it, and when the boy insisted, he then tried to give the puppy away free.  But the boy wouldn't hear of it and insisted on paying full price.  The man went on to tell the boy that the puppy would never learn to run and jump and play.  Then the boy revealed the brace on his own leg.  He told the man that he didn't run so well himself, and that the puppy would need someone to keep him company and love him as he is.  The woman on the radio went on to talk about recognizing value in people, things and animals that may not seem, at first glance, to be perfect.  (Her version was scripted much better than my own.)

And even though I wanted to roll my eyes, I found myself crying.

...crying because I so want my daughter to be recognized as valuable.  And I know that it may be an uphill struggle.  I know that many people wouldn't have chosen a child not viewed as perfect, and that ultimately, with modern prenatal testing, more and more people will be getting the opportunity to make that choice.  And they'll likely be making that choice based on fear, without the benefit of witnessing the beauty, joy, love and value that can exist in that child.  At that moment, alone in my car, the thought was so raw and so painful.

I turned off the radio and cried.

And then strangely, my emotions shifted, and out of nowhere I was struck with a glimmer of my initial grief:  the grief that tore through me when Cora was born, but that I didn't allow to stay.  Shocked, but unable to hold it back, I let myself cry, all the while feeling like I was somehow betraying my girl.  Through my tears I questioned how I could be feeling grief over something I love so deeply.  If I feel sadness, how can I expect others not to fear what I have, or not to have pity, let alone to recognize what a gift my daughter is?  How could I reconcile this startling sadness with the overwhelming love I have for this child that I would walk through fire to choose again and again?

A few moments later a sense of peace came over me and I was struck with gratitude.  Gratitude of course, for my beautiful girl and for the pure joy that she brings to my life.  Grateful also that I was smart enough and humble enough to recognize something good when I delivered her on my living room floor.

But grateful too, for that small moment of sadness that I shared with myself alone at a stop light: for allowing my defenses to bend for an instant, to let in my own worries and fear and sadness, still recognizing that it doesn't negate my love.  It doesn't counteract my fierce desire to protect Cora or to share her beauty with the world.  It is just a small part of me now.  Maybe a part that I didn't know was still lingering.  But it's a part I can accept for a little while at least, knowing that it'll get smaller every day, as it's eclipsed by my daughter's smile.

Need a Smile? 31 for 21

I needed a smile this morning.  This face did the trick.

Love my zany little girl.

She's Finding Her Voice- 31 for 21

Cora has really been using her voice a lot lately.   In new and loud ways.

And my, how far she has come.

When she was a newborn in the NICU she couldn't cry.  Well, she did cry, but she cried silently.  When we went home at night to sleep I always worried that her cries would go unnoticed by the nurses when we weren't there.  Her little face would still scrunch up and she would cry with all her might.  It just so happened that she didn't have much might when she was in heart failure.

Seriously.  He didn't realize she was crying.

Then after heart surgery, Cora started to find her voice.  She started to cry.  Granted, it wasn't a loud cry.  More like a little kitten mewl.  But for several weeks after surgery she cried a lot, obviously in discomfort, despite the surgeons' assurances.

She gradually began to babble, jabber and yell.  But for the longest time, even her yells weren't very loud.  As a parent you seem to feel every sound your child makes, so it always felt loud to me.  But when I heard typical babies cry or yell I would realize just how quiet my girlie was.

As time has gone by and her core strength has improved, she's been gaining some volume.

These days she loves to yell and yell loud.  While she still can't easily make high pitched noises (the only exceptions being her pretend hiccups, followed by her giggling "excuse me," signed while she says "eeeee eeee"and the occasional split second when her squeal  hits a higher octave when Daddy gets home from work) she's got a pretty low, gruff little voice.

Lately she's been using that gruff voice to growl.  It's not uncommon for her to vehemently growl "NO," while swinging at me from the confines of her seat as I clean her face.  Yes, we definitely hear some disgruntled yelling throughout the day. 

But for the most part we hear her happy excited yell, her game of saying "no" to everything, and her more and more frequent words and sounds.  It's starting to become increasingly obvious that my Little Miss is trying to talk.  She definitely has some motor difficulties that are keeping her from making words sound the way the rest of us say them, but she is trying all the same.  And she is making progress, little by little.

It's a slow path.  But she is finding her voice more and more every day.  And we are (mostly) loving hearing it.

Slow and Steady- 31 for 21

Elated.  That's how I feel when I look at this photo.

I see the excitement in her face, mingled with a hint of apprehension at being up on her own two somewhat unsteady little feet.

Watching her wobble her way into this new phase makes me happy in a way that feels almost physical.   Seeing her start to stand up side by side next to her peers and maneuver around the playground (even if she still holds my hand much of the time) is pretty amazing.

It's kind of funny, since there was never any doubt that she'd walk, but sometimes it felt like it would never happen.  She's still got a way to go before she'll be walking around all the time, but she's getting there.  Slow and steady.  And that's just fine by me.