Tuesday, March 26, 2013

Finger Painting. No Fun at All.

It'd been some time since I had been up to braving the mess of finger paints. I thought Cora would have fun.

But touching the ewey, gooey paints was not Cora's idea of fun.

Skeptical and not at all pleased with the taste.

"What is this horrible stuff on my hands?"

Washing the yucky stuff off her face didn't help.

Things got a little better once I let her help me clean up.

She seems to have gotten the "clean gene."  I have no idea where it came from.

Monday, March 25, 2013

Bears, Chickens and Elephants! Oh My!

This weekend, in between trying to coax Miss Cora to eat (yes, she is inexplicably refusing most food and drink, even her beloved stand-byes), we managed a couple of fun outings in the still-chilly Portland air.

This time we took Cora's Daddy to one of her very favorite places: the zoo.  Cora is quite the animal fan.  She knows a remarkable number of animal signs.  A good portion of the approximate 300 signs she does are for animals.  So she loves a chance to see them in action.  Her absolute favorites this time were the bears, the chickens, the sea lions, and the elephants. Nick swears he even heard her say "ele-bah."  Exciting stuff.  When it's not so busy, she loves to spend time with the giraffes and zebras, fish, goats, hippos, and crocodiles.  The fun of the zoo is that there is so much to see.

Captivated by the bears, once again!

Cora even decided to practice "walking," and insisted that she be put down to practice strolling down the paths on her unsteady little feet, holding two hands of course.

We even got to finally show Daddy little Baby Lily, the 4 month old elephant.  She is so cute, but is tricky to photograph playing with her mommy and eating!

Reaching for her Daddy.  Apparently Momma just wasn't cutting it anymore.

Overall, it was a nice chance to get outside together as a family.  We're getting excited for spring to really arrive, and are gearing up for a trip to Grammie and Grampie's next weekend.  And now for a glimpse of our silly little trio.

Thursday, March 21, 2013

A Mother's Hope: World Down Syndrome Day

Today, March 21st, is World Down Syndrome Day.  Chosen because 3/21 signifies the three copies of the 21st chromosome that are responsible for Trisomy 21 (Down syndrome), it is a day when those who love someone with Ds and those that have Ds shout it from the rooftops:   

Down syndrome is natural!  Down syndrome is beautiful!  My life is enhanced by Down syndrome!

These are messages that I, too want to share.  They are things that I've said before and that I hope I convey often.

Yet, as I celebrate my third WDSD, the thought that keeps coming back to me is that for all these pronouncements, for all this awareness, there is still so far to go.

A couple of weeks ago I had an experience so familiar to parents of people with Down syndrome.  Someone in the periphery of my life confessed their admiration for me.  He went on to tell me that there are so many people that would have chosen not to walk this path that I now live; those who would have given it all away.  He went on to talk about how knowing that there are people who "are worse off and who have it harder" inspires him to live his own life fully. 

And I know he meant well.  But that sentiment: that I am one of those that is worse off because Cora is in my life; that stung.

The fact is that Down syndrome is still seen as something to pity.  Those who truly love a person with Ds are still seen as heroes.  Our exclamations that we love our children and that they are worthy of that love is somehow not quite believable, even as they ooh and aaah over the adorable photos of our adorable children. We want the world to know that our loved ones are smart, are funny, are interesting; are in truth, full and incredible human beings.  But sometimes getting this truth out into the world seems like a long hard road.

And that is what I would like to see change.

I know that my child is seen as an other.  I see it on strangers' and acquaintances' faces, though she is only 2 years old.  I know that my child is part of a group of people that are still considered acceptable to marginalize.  Heck, as much as it pains me, I know that many people don't even see her as being fully human, fully worthy to be living this life that she lives.

And in this process of being her mother, I've become something of an other too. I am a Down syndrome mother. 

Strangely, although people-first language is supposed to apply to those with a disability, it does not apply to those who love them or raise them.  For some reason it is still acceptable to define me by the fact that my child has an extra chromosome.  Not simply a mother, but a special needs mother.

As much as I'd love to be just another mother, and as much as I wish that my daughter's own differences didn't set us apart, it still seems that the world just isn't quite there yet.  Until differences are seen as part of the natural and normal web of life, we're not there yet.  Until words that were once meant to describe people like Cora stop being thrown around lightly to describe anything stupid and worthless, we're not there yet.

Sometimes this seems so daunting and so impossible.

But the rest of the time, I am simply and completely blown away by what I am learning as I walk this path.  Despite the challenges, the fears and the worries that I battle now and then, this is a life of joy and of love.  It's a life I wouldn't trade for anything. The lessons I've learned in the past two years have shown me how important it is to widen my focus and learn to see the value and importance of every human being.

And so, as I observe and celebrate today, I hope deep in my heart that in this life I will be witness to a shift in perspective.  I hope that this enormous community effort to raise awareness of people with Down syndrome and others who are differently-abled can help to bring about the understanding that all people are different, and that difference is natural, valuable, necessary and something to appreciate.

I hope that my daughter will be able to live her life in a world that continues to change and evolve and that accepts her as a whole and valuable human being.  I hope to be a part of this change.

Sunday, March 17, 2013

Enough Already

Maybe it's just me... but sometimes enough just feels like too much.

Sometimes the thoughts in my head seem to take over my body, to take over my life.  Sometimes I just feel like I can't stop the churning.  Then the little thoughts and ideas all spin together and become a big, overwhelming ball of too much.

Sometimes I just don't feel like I can handle it all.  I have days like yesterday, when I woke up overwhelmed for no good reason.  The day's events sound relaxed and pleasant: breakfast at New Seasons to give Cora her coveted bagels, music with Tallulah's Daddy, and then calming tricks for me during naptime. Mellow music on Pandora, a steaming mug of chamomile tea, a warm bath.  Nothing was helping. I even splurged on a solo outing while Cora had a date with her Daddy at the pool.  I was dropping Rescue Remedy like water, but nothing seemed able to stop the anxieties from overwhelming me.

But today is a new day.  Today I feel calm.  Today we took Cora to a lovely friend's birthday party, where she hid from everybody and then had a good time rocking out when a great kid's musician played.  Today I am relaxed on the couch with my laptop, thinking about a trip to the park.

Why is today so different from yesterday?  Why do I feel like a human today, when yesterday the world kept trying to eat me alive?

Some days the world seems too big.  Things like thinking about preschools and helping Cora deal with other children, orchestrating her schedule, and making a thousand little decisions; it always feels like there are such big repercussions for it all. 

Sometimes Down syndrome feels too big.  Sometimes the blog posts I want to read just send me into my cycles of stress and worry.  Some days I just can't keep up.  Some days the ideas and perspectives, successes and not-yet-successes I see on Facebook just make me want to hide from it all.  Sometimes I just want to hide and stop all the spinning, all the churning, all the mess in my head. 

And some days the world seems bright, the perspectives enlightening, my daughter inspiring.  So glad today is one of those days.

The best inspiration.

Thursday, March 14, 2013

Too Shy?

Cora is often a study in contrasts.  

Although we learn to compare and contrast in school, pitting one thing against another in order to define it, most of life and most people aren't this black and white.

Cora is sometimes a social butterfly, especially from a distance.  She may peek out bashfully from lowered lids, waiting to make sure you aren't going to get too close, but once she decides you're okay, she downright glows.  She sends out smiles that can make awkward 14 year-old boys and crotchety old men grin in spite of themselves.  She can flirt with the best of them: blowing kisses, waving, and initiating long games of peekaboo. 

But that's all with grownups.

With children it's another story.  She is scared of them.  If there are kids around, she is most certainly in my lap, arms around my neck, watching to make sure the little rascals don't get too close.  Occasionally she'll warm up enough to scoot around a little after a toy, or hold my hands and walk around the room, always making sure I'm still within touching distance.  After being put in the child care room during a seminar this past weekend (even though she was with adults that she knows and likes), she is much more nervous now.

It seems that all the other kids her age are less nervous in one another's presence.  They seem more willing to play, alone or with others.  Even if they're just a foot or two away from mom or dad. 

And I'm starting to wonder if this is just a phase.  Stranger danger began for her at 6 months old, and is obviously still there.  But is this something more?  Should I be concerned about her coping skills?  Is it a sensory issue?  Is it because kids are fast and loud and she is still fairly slow and less loud?  I can understand that.  But she is most certainly going to be around other children in life.  And heck, preschool is less than a year away.  Is this a real problem?

Or is this shyness just her personality? 

I don't want to automatically try and fix her.  Yet at the same time, I want to encourage her to explore her world, to make friends, to develop attachments with people other than close family.  I know that she is still quite young, but I definitely see that her interactions are different than most other kids (typically-developing and not).

Other moms out there:  have you experienced this with your kids?  Any suggestions?  When did you decide it was a problem or why did you decide that it wasn't?

Sunday, March 10, 2013

Practically Perfect

The last several days have felt practically perfect.

The terrible-two-attitude that has been pervading so many of our days over the last month or two seems to have subsided, bringing back the happy, smiley, silly goose that makes every day brighter.

Of course a mama's love is unconditional, but days filled with whining, hitting and all-around orneriness get hard.  Especially when they start to feel never-ending. 

Our sickness offered a reprieve, in a way.  Our once-busy schedule was wiped clean and replaced with hours of television and snuggles.  My seemingly endless cyclical and over-analytical thoughts and stresses were calmed by our break from the outside world.

By the time we were healthy, both our attitudes had shifted.  I was less stressed.  Cora was happier, nicer, sweeter. 

Lately our days have been filled with laughter and play and way more fun.  And Cora is soaking it all in.  A couple of days ago at dinner Cora had the entire dining room eating out of her hands.  Blowing kisses, waving, and offering to share her food, she managed to captivate the whole room.  People just couldn't look away.  And I totally get it.  I can barely look away myself.

I've been wanting to capture this side of her in photos, but somehow it's elusive.  Yesterday we took the camera as we prepared to set off to the park as a family, excited to enjoy the beautiful weather and let our increasingly mobile girl get out some energy.  But alas, I put a damper on our mood when I caught sweet Cora's little chin in the clasp of her helmet.  We were both pretty shaken up by it, although she forgave me immediately.  A little more somber than before, we still managed a nice afternoon.

We're getting ready to pick up the pace a little in the coming days.  But I hope to keep our attitudes light, to continue to enjoy our moments.

It's amazing how good that can feel.


Wednesday, March 6, 2013

Not Just Sticks and Stones

Once again, I ask you to "Spread the Word to End the Word."  This is a campaign to end the use of the words "retarded" and "retard" as slang.

Because even when you "don't mean it like that", these words originally described individuals with cognitive disabilities.  Individuals like Cora.  Now these words have evolved to refer to anything that people want to call stupid, dumb, and worthless.  And that hurts. 

Even the medical community is using this phrase less and less frequently, aware that its use as slang has made it offensive.  It is now considered a disability slur, a hate word.

So take a few minutes to think about how using this word would make a mother like me feel.  How it would make anyone who loves someone with an intellectual disability feel.  How it will one day make Cora feel, when she hears it on the playground.   Even if you think that this is an issue of being "over sensitive", it's really just a matter of respect.

So take the challenge today and make the pledge.  Pledge to Spread the Word to End the Word and stop using the words "retarded" and "retard." 

For some of my favorite posts on this topic, check out these links:

The Unknown Contributor- It Wasn't Meant That Way

Fighting Monsters with Rubber Swords- Just a Word

Garden of My Heart- Retard

Love That Max- Do you get why this word hurts so much?

New York Times- A Word Gone Wrong