Sunday, April 6, 2014

Third Heart Day

Three years ago today, my baby got the chance to start her life.  At the crack of dawn, she was whisked away to a wonderful surgeon who used his skills to fix her faulty little heart.

In the 11-1/2 weeks leading up to that day, there was so much fear.  So much worry, so much stress.  So many decisions to make.  So many bittersweet moments of loving this tiny girl, all the while knowing that there was a chance that her life would be cut short.

I remember taking photos of her intact white chest, knowing that it'd be the last time I'd see it unmarred by the surgeon's marks.  I knew that it would be a scar that she would carry forever, if she were to make it out of this surgery. 


These days her scar is faint and white.  If you ask her about it, she'll gladly lift up her shirt to show you her scar.  It's funny, because I have always felt like I should have a matching scar myself.  I guess I do, although mine is invisible and more metaphorical.  That process definitely marked me with my own permanent scars.  But my scar is in my mind and in my memories.

 

Sometimes those days seem like just yesterday.  It only takes a second to bring back that feeling of fear, and to feel the tears start to fill my eyes.

But, you know what?  We aren't there anymore.  Today I watch my big girl run around her Grammie's house, dancing and singing and reading books.  She has no memory of those days of fear.  And they are fading more and more into the background of our life together.  We know how very much we have to look forward to with this wonderful little girl.

And so today, on the THIRD anniversary of Cora's open heart surgery, I am purely and simply grateful.  Grateful for all the moments we've shared together since that day.  Grateful for all the ways that she makes our lives better.  Grateful that there are so many people who love her like we do.

We love you, Cora.  Happy Heart Day!

Friday, March 21, 2014

World Down Syndrome Day- A Mother's Hope

Today is World Down Syndrome Day. 3/21, the date that represents the three copies of the 21st chromosome that are responsible for Down syndrome.  Today we celebrate all those in our lives with this extra chromosome.  We have certainly been celebrating Cora, and she is celebrating herself by refusing to come inside out of the beautiful spring day we're enjoying.  

This is our fourth WDSD (I know, I can barely believe it myself).  I've written a post on this day for the past three years, but today, I am sharing the post I wrote last year.  I send my hope out into the universe once again. 


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.

World Down Syndrome Day- 2012 

World Down Syndrome Day- 2011

Wednesday, March 19, 2014

A Day in the Life...

As World Down Syndrome Day approaches on March 21st, join in on our Blog Hop, as we describe a Day in the Life...

Our first peep from Cora comes around midnight.  She wakes up and starts hollering from her room for one of us to come get her.  Because we are sleep-deprived as it is, this is as far as our sleep training process has gotten us.  One of us gets up and brings her into our room, where she snuggles up with her Daddy for a few hours.  Between 4 and 5 she starts to wiggle.  Nick tries to keep her asleep for as long as possible, but some time between 5:30 and 6:00, he usually rolls her over to my side, where in a half-asleep state she grabs and claws at my face until I can stand it no more.  If it's before 6:30, I bring her out to the living room and put her in her pack-and-play and turn on a show... Signing Time, Sesame Street, and Curious George top the list.  Then I go back to bed and try to rest for another half hour or so, until Cora's hollering gets me out of bed.  (And yes, she recently discovered that she can escape the pack-and-play, so we'll how long our stay-in-bed technique continues to work.)



I finally crawl out of bed and let Cora out of her little prison and make myself a mostly-decaf blend of coffee.  I sit with my coffee and read e-mails or junk out on social media while Cora plays around me, squirms her way into my lap with a book or two, or begs for some iPad time.

Then we have breakfast: Cheerios and yogurt on most lazy mornings, sometimes interspersed with something fun like french toast, oatmeal or eggs.  I try to pay enough attention to Cora to keep her food on her tray and on its way to her mouth, but she often topples her food over and proclaims, "Oh no..." and breakfast is over.

Then it's usually dance party time.  Cora yells "tunes" and I turn on Pandora.  We mix it up a bit.  Raffi radio sometimes, reggae at others, and if we're feeling sassy, maybe a little Cyndi Lauper.  Cora shows off her moves as she dances around the living room, making sure to keep tabs on whether I an dancing enough or just going through the motions, and copying my best dance moves (which I am sure she performs much better than I do.)  She holler-sings along, kicks her feet, bops her head and giggles around the room.


We then head into the bathroom to get ready for the day: teeth brushing, sunscreen, hair.  If I am feeling up to wearing a little makeup Cora always asks for some too, and grins after I put a little pretend powder on her cheeks.  She makes fishy faces in the mirror and laughs at herself.  We get dressed.

After some cajoling, we usually both have socks, shoes and coats on, and we head out of the house for our morning activity.  On some days it's Cora's "Music, Marching and Make Believe" class, on others it's a trip to the indoor park, or if weather allows, the real actual outside park.  We go to see live kids' music about once a week, and about once a week we have a therapy appointment for Cora (either speech therapy across town or one of her school district therapists visits the house.)  Other days it's the local Science Museum, or the library, and we even manage to work in the occasional doctor's visit for Cora or for me and a bit of errand running. 

Then it's home for lunch and nap.  These days I lie down with Cora until she falls asleep.  I know it's not the best habit to be in, but after our running around, it's a nice time to relax a bit, and catch a few giggles and snuggles with my girl.  There's just something so sweet about her as she holds onto her blankie and puts her snuggle-puppy in between us, looking at me with a sleepy smile and pushing her forehead up to me for kisses.  While she sleeps I manage to put in some time at my work-from-home job.


 After Cora wakes up, we play a bit in the house, have some more snuggles, and eat a little snack.  The rest of the afternoon can vary.  Usually we'll stay around the house, playing outside if it's nice enough, or trying to keep busy with indoor activities.  Cora runs around commenting on the dogs, birds, squirrels and cats, and waving to the cars that go by. On really long days, we may run an errand or two, or go on a fun adventure outside the house, especially when I am feeling incapable of coming up with hours of activities for a toddler with a pretty short-attention span.

When 5:00 rolls around, it's time to be home and making dinner.  Cora loves to help, but is not content unless she is right in the thick of things.  And with the oven and the stove, that doesn't tend to go over too well.  So sometimes I will distract her with some more iPad time, or an episode of one of her favorite shows until Daddy comes home.

When Nick gets home she runs for him, yelling "Daddy," and usually ready to give him some well-earned hugs and kisses.  She helps Nick get settled and then we sit down to have dinner.  Dinner, like all meals, is sometimes pleasant, but often frustrating, as Cora's food preferences seem to shift with no notice, and getting a balanced meal becomes an exercise in futility.  Although she is fully capable of self-feeding, she often needs help so that her food doesn't end up on the floor, or shoveled in too quickly that she can't handle it and just spits it all all.  Dinner always feels like work, but it's getting better.

After dinner there's play time with Daddy, with lots of laughing, screeching and silliness.  Eventually pajamas get donned, teeth get brushed, and stories get chosen.  On really long and exhausting days sometimes we watch a show as a family before her 7:30 bedtime.  After many goodnight kisses, Nick takes Cora to bed, where hopefully he doesn't fall asleep, and we both keep our fingers crossed that she actually goes down and stays down until her midnight wake. If we're both still awake, we may actually get in an hour or two of time together.

All in all our days are long, very ordinary, and often mundane.  But they are filled with laughs,  snuggles, and songs too.  It's amazing how busy Cora and I keep one another, and hard to envision how much our days will be changing when her new sister arrives on the scene, and when Cora heads off to preschool a couple months after that.  Sometimes it's so easy to get caught up in the day-to-day routines that you don't see how quickly things change. And it's even easier to forget to appreciate the moments we share.  But Cora is a pretty amazing little girl.  For all the toddler frustrations and power struggles, challenges with communication and things that we are working on, she still manages to bring me back into the things that are most important:  our little conversations and silly "jokes"; the hugs and snuggles; the booty-shaking, foot-stomping, dinosaur-roaring boogying.  It's these little things that make me smile when the day is done, and that help me drag myself out of bed in the morning, ready to start it all over again.  It's these thousands of little moments that make up what is really big, what is really important, what we really have that's worth living for.



Monday, March 17, 2014

Guest Post for World Down Syndrome Day

World Down Syndrome Day is Friday, March 21st.


In honor of WDSD, my friend Sarah over at VaginaPagina asked me to write a guest post.  As we wait for the arrival of Cora's new baby sister in a few short months, I wrote a bit more about my thoughts and feelings on having another child, prenatal testing, disability and Down syndrome.

Check it out here!

Thursday, February 20, 2014

Silly Cora... This and That

Cora has been cracking me up regularly these days.  I swear, her cuteness seems to magnify exponentially, even though I am not sure how that could be possible.

And she's been exhausting me too.  I sure am glad she's walking now, and although it means I don't have to carry her everywhere anymore, I don't have a whole lot of say in where she wants to go.  And believe me, she can get where she wants fast.  So there's a lot of chasing her around going on.  Good thing she's still only 24 pounds. Today after getting her out of the car, in the time it took me to drop the diaper bag on the porch, she had run down the entire driveway in the rain and was just a few feet from the street by the time I caught up to her.  I guess I need to keep reminding myself that there's a first time for everything, and my former cautious little girl who had never walked down the driveway without holding a hand is learning to stretch her boundaries.    I imagine as my pregnancy with Cora's new little sister progresses, this is going to be more and more tiresome, not to mention possibly scarier, as I realize how very short the run to the street seems to be.  I know this is pretty much just me being welcomed to the world of parenting a true toddling "toddler," but it's still been quite the transition.

On a more fun note, Cora is now blowing kisses with a new "smooching" sound.  And she seems to know what an appeal it has, since she is sending her kisses all over the place.  Combined with a princess-wave and a handful of "bye-bye"s, it's pretty dang adorable.

She has recently started puckering her lips to ask for kisses.  Most of the time this looks like fish-lips.  And giving her a kiss is never enough.  If Daddy's home, she'll make sure I give him one too.

Whenever I come home from my once a week trip to the office or the occasional solo trip to the grocery store, she is so excited to see me.  She signs and yells "Mama," then runs up to me and hugs my leg until I can bend down and give her a real hug.  Daddy gets similar treatment most of the time, and he actually leaves the house on his own regularly.  Coming home to this little girl is quite a treat.

Her new favorite word is "Ow."  She's turning into quite a dramatic girl these days, always ready to tell you about her newest imaginary aches and pains.  When she is hurt for real, she doesn't tell you where she got hurt though, just has you kiss the fingers on her left hand when she is done crying.  Right now what must be her fourth black eye is now turning green and fading away.  With the introduction of walking also came the introduction of falling a lot, often head-first onto hard surfaces.  Thank goodness for our chiropractor!

She has dancing fever.  She'll yell out "tunes" and drag me into the living room to dance to her favorite music.  She loves to copy dance moves, but she's a bossy little thing, often pulling me down to sit on the floor with her and drum, or to stand up and stomp around the room with her.  Heaven forbid you walk away when she's still in the groove.

Let's see, I am sure there are many more fun little tidbits to share, but for now that's all I've got.  Hope you enjoyed your taste of Cora's antics for the day!

Kissy face.  What a good Mommy to baby Hopkins. 

Proud to be carrying Hopkins in her own little "Moby wrap."

Yep, she's a goofball.

Showing off her silliness and her floor length gown: AKA Mommy's old beat-up maternity swimsuit top.


Friday, February 14, 2014

My Little Valentine

Valentine's conjures images of heart and flowers, love and romance.

For me, this year, it brings up lots of thoughts about hearts.  Cora's heart, to be specific.  Today is the last day of Congenital Heart Defect week, and I'd be lying if I didn't say that this subject is one that is now very close to my own heart.

My little beauty was born with a significant heart defect and was born in heart failure.  From the time of her birth until her much-anticipated open heart surgery at 11-1/2 weeks old, it was a time of stress, worry, and struggle to get her big enough and strong enough to make it through surgery.  Because her heart had to work so hard, she could barely eat, and had to be fed largely through a tube in her nose.  We gradually watched her grow weak, pale, listless and sweaty, watched her develop reflux so severe that people who saw her would blanch and turn pale themselves before turning away.

Today, Cora's heart defect is really just a memory.  Thanks to the skilled hands of her surgeon and his amazing team, she now has a scar on her chest (which she will gladly show you if you ask), a mild murmur, and a return appointment for a check-up in three years.

To be spared the worry about that sweet little ticker is something that I am truly grateful for.

Next week we'll be going to have a peek at our newest little girlie's developing heart, and are hoping that all checks out well.  While we are so lucky that most heart defects are treatable today, it is a stress that no parent wishes upon their child.

So on this Valentine's Day, I send out my thanks to all the people who helped fix my Cora girl's tiny heart.  And I send my love to my sweet girl, and the rest of the loves in my life.

Happy Valentine's Day.

Wednesday, February 12, 2014

Sisters

I'm not sure if as a child I recognized how lucky I was to have my two sisters.

Erin and I were very close in age and were a combination of best friends, rivals, and antagonists all at the same time.  Mira was born when I was almost five and I was so proud I could hardly stand it.  I used to pretend that she was my baby.


Over the years our relationships changed.  Erin and I had our years of arguing, and then our years of growing close and becoming incredible friends.  Mira was younger, but was such an old soul, and so beloved by all of us, that the age difference didn't matter much. 

As an adult my sisters are two of my very best friends and two of the people I admire the most.  The only thing I'd change at all is the physical distance between the three of us.


They are the reasons that as a child I could only picture myself with daughters of my own.

This week I have been thrilled to learn that Cora will have her very own little sister in just a few short months. I can't say that I know what their relationship will be like, or really anything about it just yet.  But I can't help smiling as I remember this again and again, and I know just how lucky my girls will be to have one another.

Sisters!