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.

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.

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!

A Few Days of Winter

Our little corner of the world is starting to thaw out, after a few days of real winter.  It's been over five years since we've had much in the way of snow, and it was beautiful and a bit thrilling.

Luckily, our family was able to stay at home.  Cora and I have been finishing up almost two weeks of having colds, so we'd already been cooped up for some time.  Having an excuse to stay in and watch our world change from the warmth of our little house made it all seem sweeter.

When we took Cora outside to experience the snow, she was pretty excited at first.  She happily let us help her with her coat and hat, mittens and boots. 

But then she actually walked in the stuff, fell in the stuff, and touched it with her bare hands.  That was it for her.  She was done.

But she was pretty happy smiling for the camera while sitting on the steps that Daddy just shoveled.

Over the next day or so, she allowed us to pull her around in our makeshift sled (the bus tub we use for her baths with a big rope tied around it.)

Late Saturday, the snow turned to freezing rain, and turned our winter wonderland into a slippery, icy, dangerous mess.  The city sent out emergency warnings telling people to stay home and to keep cars off the roads.   Eventually, the freezing rain turned to the plain old rain we know and love, and we're now in the slow melt.

I guess it's time to get back to our regular lives about now.   If we can venture my little not-very-snow-ready car beyond the driveway, I'm sure Cora would love an outing that extends beyond the front yard, and I know that I could sure stand to get out of the house.

But it was nice to get a little bit of winter.  I'm just glad it was just for a few days.

Just for a Second

Reading an article a couple days ago, the author described her morning wake-up ritual.  Her three year old padded down the stairs, opened her bedroom door, climbed into bed with her and barraged her with a string of hilarious and heart-warming sentences.

And just for a second I felt that old twinge again... the one that almost feels like pain in my heart, as I thought to myself, "Oh how I would love to hear Cora speak to me like that one day..."

I don't know why it has to be painful, even if it's only for a second or two.  Because even though there are no guarantees, I do believe that she'll be talking one day. 

It's just one of those things.  Waiting, hoping, having faith.  And realizing that all the other seconds, minutes, hours of the days I am truly happy with where she is.

The elation I feel when she speaks her one-word approximations is hard to beat. The joy I get daily in really just taking in the funniness, the silliness, the absolute loveliness that she is.  Hearing her giggle, or watching her come up so close that our noses are touching, as she cups my face and whispers to me her language of jabbers and gestures...   Seeing her ham it up as she dances around the room, arms and face raised to the ceiling belting out some words I can only guess at...

No, I don't feel sorry for me.  And I don't feel sorry for her.  Sure, one day I would love to hear her whisper a complete and coherent sentence in my ear.  But even if I don't, it will be enough.

Reading with Cora

For over a year I've been involved with a group of local parents that has come together to share ideas on teaching their children with Down syndrome and other developmental disabilities to read.

It's been a great source of inspiration to me, and has been a wonderful network of support and friendship.

Our group, Portland Literacy Launch Pad, recently teamed up with The Learning Program and are really excited to see where this group will take us.

You can check out my recent blog post on reading with Cora up on our new website here:

Reading with My 3 Year Old with Down Syndrome

Having Another Baby

If you've followed this blog for very long, you may remember the post I wrote almost a year ago about whether or not to have another baby.

At the time I was not at all ready to have another child, but I was feeling the pressure to make a decision, as Cora had just turned two.  I went back and forth over the pros and cons, questioned all my intentions and suppositions, and put all my worries out on the table.  And I got a lot of really wonderful responses to that post.

And what I realized is how very personal that decision is for each and every person.  I simply wasn't ready at the time.

Fast forward less than a year, and here we are, expecting our second child in early July.

I've had a few people ask for me to share my process in making that decision.  And I've had a couple of people express that they are worried for me, or that I must be so afraid. 

As for the process we went through in deciding to try again:  the simple truth is that we just felt ready.  Attribute it to getting slightly better sleep over the past few months, perhaps, or to Cora seeming less like a baby.  She must somehow know it's time to become a big girl.  Heck, a couple of weeks of after we learned about the pregnancy, she completely weaned and became a full-time walker.  Talk about making some big-girl strides. 

As for fear and worry, I think that many people assume that Cora having Down syndrome weighed heavily into our decision, but I'm not sure how much that is true.  Of course, she does have Down syndrome, and our lives are definitely affected by it.  Her delays do make her path through childhood and development different than may be typical, and we have long-term concerns for her that are more complicated than they may otherwise be.

But all in all, Down syndrome didn't factor in as much as you might think.  And the fear of Down syndrome certainly wasn't a big consideration.  Many people on the outside of the disability world seem to assume that Cora's diagnosis is a huge burden and something to be feared.  And depending on their situation and where they are on their emotional path, a lot of parents of kids with disabilities fear it, as well.

Statistically, once you have a child with Ds your risk of having a subsequent child with Ds goes up to 1:100, and can go up even more if you have other risk factors like advanced maternal age or being a balanced translocation carrier. There are no certain answers as to why the risk increases, just as there are no certain answers as to why Trisomy21 occurs in the first place.  Learning this when Cora was a newborn made us a little nervous at first. But very soon we began discussing how much we felt that Cora would benefit from having a sibling, and most of our thoughts on having another child have continued from that point of view.

I think the biggest challenge for us was making the decision to expand our family not solely because we felt it would likely benefit Cora, but because it was something we wanted as a family.  As I've said before, there are no guarantees when it comes to having children, so making a decision solely to "help Cora" wasn't convincing me.  There is no guarantee that another child will help her, just as there is no guarantee that any child will be healthy, or free of disability, or happy, or anything else.  That is simply part of being a parent... choosing to love something that is so much out of your control.

But that is a risk that we are willing to take at this point.  We do not fear having another child with Down syndrome.  As much as we know there would be some advantages to raising Cora with a typically-developing younger sibling, that is not really up to us.  We also know that there would be many advantages to raising Cora with a sibling with a disability or other health challenges.

I won't tell you that I wouldn't love to not have to worry about health issues, hospital stays or surgeries.  I would love for this baby to be healthy and not have to face life-threatening concerns.  A new pregnancy can definitely bring anxieties to the forefront, and for me most of those surround all the fear I felt after Cora was born until she had her heart surgery, and when there have been other health scares.  I am not particularly eager to relive those fears, not with Cora or with a new child.  But these are not the decisions that I get to make.  All I can do is trust and hope, and make whatever plans I make with that in mind.