Monday, October 31, 2011

31 for 21- Day 31: Ta-da!!!

This is it... the final post for the 31 for 21 challenge. 

Have you learned anything new about Down syndrome this month?

Checked out any new blogs?

Fell in love with the adorable faces of any cuties sporting designer genes?

I know I have.

This has been a great challenge for me and I hope I've lived up to it well.   Not all of my posts this month have been about Ds, as you will notice.  And that's just because our lives don't revolve around Ds.  But we are affected by it, in a powerful and often wonderful way.

Most of all we are affected by the crazy love we have for this silly little girl who's become the center of our lives.  And we are so happy for all that she's brought us, including new awareness, new friends and a new focus on life.

I may take a little breather after posting daily for the last few weeks, but I think I've become inspired to step it up a bit.  So you may just be seeing a little more of me (and of cute little Cora too).  And thank you to all the other parents participating in 31 for 21 this month.  You inspire me, make me laugh and make me cry.   

For my readers who may not have checked out many of the other blogs I follow, you can find their links in my sidebar.  I seem to be adding more all the time.  

And if you want to contribute to promoting awareness for Down syndrome, please share this blog or others with your friends and family.  Goodness knows that the more real, accurate and true-to-life information that is shared, the better informed people will be about the kind of blessing a child with Ds can be.  It may not be a perfect life, but it is a life worth living. 

Happy Halloween.  Have fun with your little (and big) trick-or-treaters tonight.  Thank you for reading.  It means so much to me.

Sunday, October 30, 2011

31 for 21- Day 30: A Scary Day

Hi everyone.  Cora here.

Mum is pretty tired, so I thought I'd write today's post, even though I'm still a little mad at her.

Today she took me to a very scary place.  First she put this outfit on me.  For some reason she took lots of pictures.  I don't know what the big deal is.  But she takes a LOT of pictures of me.  At first everything seemed OK.

Then she put on these weird clothes.  It was fun to touch her hair and the balls on her shirt, but she looked pretty strange.  I wasn't too sure about it at first but then I realized it was just Mum even though she looked different.

After that, things got pretty bad.  She took me to this place with a whole bunch of people and lots of babies in weird clothes.  There were some good toys, so I played for a bit.  But everybody came to say hi to me and that was kind of scary.  I'm not sure why Mum wasn't scared too. 

Then she put me on the couch next to some other really scary babies and a whole bunch of people tried to take our pictures.  Luckily I screamed and cried enough that Mum picked me up and took me home before she got pictures with all the other babies. 

Anyway, once we got in the car things were fine.  Now we're home with Daddy, although he's playing with worms outside.  I can't wait for him to come in and play with me.

Mum says to say Happy Halloween.

Saturday, October 29, 2011

31 for 21- Day 29: Fountains and Fries

The day is winding down and we're all a bit exhausted. Up visiting my parents for the weekend, we decided to take an afternoon trip to the Seattle Center for some food and fun.

The food carts were out in force, which would have made it feel like Portland, if not for the distinctly Seattle-esque scenery.

We sampled some yummy foods: pulled pork, Vietnamese sandwiches and some gourmet burgers.  Then we sat by the fountain, where we were thoroughly entertained for the rest of the afternoon.  That fountain is crazy and erratic and strong and will get you if you think you're smarter than it is.  We watched a lot of people try their luck against the fountain and get wet, including a kid in a full winter jacket and a dad with a baby.  But you ask for it... you get it.

After sitting and watching for a while, with the Beanie Girl wavering between being mesmerized and hooting and hollering with the rest of the crowd, her Daddy took her down a little closer... but not too close.  They ended up staying dry.  She sat down just at the water's edge with Grandpa for a while too.  She almost completely missed her afternoon nap.

And she may have gone on a hunger strike with all the excitement... until Grammie tempted her with her first french fry.  Yes, health food for a 9 month old.  Grammie peeled off the fried part and gave her the inner potato mush.  And it was a complete hit.  Her first potato.
"Hmm... this tastes a little funny Mum."

"Well, maybe it's not so bad..."

All in all, a wonderful beautiful crisp clear day in Seattle with wonderful company and a blissfully happy little girlie.  What more could we ask for?

Now we're getting ready for a dinner of fried green tomatoes, salad and some chocolate malteds for dessert.  While sipping on some of my dad's homebrewed beer.

What a lovely Saturday!

Friday, October 28, 2011

31 for 21- Day 28: Working Out

My little girlie works her butt off on a regular basis.   With most babies this is probably the case.  The difference with Cora is that due to the challenges that Ds puts in her path, we have to project a little more purpose into her play and a little more guidance into her struggles to move around.

At this point I'm pretty sure that Cora is NOT motor-driven.  Case in point:  the fact that even though she CAN roll both ways she often chooses not to.  She'll just lie there and whine until I eventually change her position.  She can pivot, but won't when I'm watching.  She can inch forward on the crawling track but hollers with every centimeter. For the life of me I can't figure out where she got this stubborn streak.  (Sarcasm, anyone?)

Trying to encourage her to crawl?  So far, not easy.  How the world do I motivate this child?  She absolutely hates having her legs bent and underneath her.  She needs to develop the strength to do this, so we're working with her on an assisted quadruped (getting on hands and knees) and kneeling, but our efforts are more often than not met with shouts and straightened hard-as-steel legs.  We're also trying to get her to put more weight on her arms, which she also hates to do.  So crawling may be a ways off.  In the meantime, we've built  her a crawling track for practice, which has many benefits, but more on that later.

Happy at first.  That is, until she realized that this is a torture device...

I'm enjoying learning about the stages of development, the skills she should accomplish before moving onto the next step, and how to try to avoid negative postures and patterns.

The challenge is delivering these "therapies" in bursts throughout the day as play.  Gross motor and fine motor and speech and communication and cognition. Sign language and reading and singing.  Luckily she loves communication play: talking, singing and reading.  Hmmm... she sounds kind of like me.  Maybe she did get that extra chromosome from my side after all.

Learning about all of this is time consuming right now.  Playing with Cora takes time.  But I guess that's why I get to spend my days with her.  I think I may just need better organization:  A list of the things we are currently working on so that I can incorporate them in our days.  I need to start better documentation so I can maintain the motivation to keep moving forward, while still maintaining a balance between learning and living.  Especially since we still love to do things like going swimming, playing outside, and meeting up with friends for playtime.  Things we do all the time and that are equally important for her development.

Whew!  Can you tell that my mind is spinning with all the information I'm taking in right now?

I guess that means it's time for a break.  Luckily, we're heading out of town this evening to go visit my parents for a fun escape from our day-to-day.  Can't wait to post about our adventures!

 Frowning at her teething ring.  Working out is not fun anymore.

"This is too much.  I'm done."

Thursday, October 27, 2011

31 for 21- Day 27: What I Wish People Would Get About Down Syndrome

"They think we love our kids in spite of the fact that they have Down syndrome. They don't realize we just love them."  These are the words of Melissa Kline Skavlem, a cyber-friend that has been such a great support to me and to many other new parents on the BBC Ds board.  These words have stuck with me in the months since I first read them.

Of the many things that I hope that people will come to learn and understand about Down syndrome, this is the biggie.  We don’t need your pity.  Our babies are not burdens.

Cora has already taught me more about love, compassion, patience and acceptance than anyone I’ve met, and she’s only 9 months old.

I won’t pretend to be an expert on this whole thing, motherhood or parenting a child with a disability, since I’m not even a year into it.

But what I know is that my life is infinitely better for having Cora in it.  And all the parents I’ve met online, in person and in print seem to feel the same way.  There is a reason that the new studies show that the overwhelming majority of people with Ds and their families are happy with their lives.

Because we are.  So know that.  And don’t feel sorry for us.

Emptying the camera today I found this video from a week or so ago. I love it, since Cora displays some of her new silly scrunched up faces, spits out her food, and peeks at me over the camera.  Pretty cute for a girl in bedhead and pajamas. Pretty cute for anyone.

Wednesday, October 26, 2011

31 for 21- Day 26: Who is This Woman?

Looking through folders I discovered a handful of beautiful photographs taken back in May by my cousin's significant other, Shon.  I remember being so happy when I first saw the photos, and can't for the life of me understand why they were shuffled into some unknown folder, unseen for months.  So thank you Shon for the beautiful photos.  There are more of Cora, as well, which I will post at another time.

As I looked over his images I registered surprise seeing myself with Cora.  My first thoughts, nonsensical really, were "Who is this woman?"  Of course I recognize my features, my face, my self.  But I didn't recognize myself as a mother.

When Cora is in front of me I absolutely feel like her mother.  To the point of starting to speak in the third person and calling myself "mum" even when talking to my best friend.  Motherhood, and especially new motherhood, I imagine, certainly takes over one's life.  I have a hard time having a conversation about anything other than Cora these days.  Fully aware of how that makes me look and even a little embarrassed about it, it's hard to be otherwise.

But still, to see myself through the camera's lens, and hence through someone else's eyes I don't quite recognize myself.  But I like it.

Me, the mom now.  I finally did it.  What a lucky, lucky girl I am.

Tuesday, October 25, 2011

31 for 21- Day 25: Family

Having committed to blogging daily this month, I've been reflecting on what this journey into parenthood has taught me.  While I have certainly learned a lot in the last nine months, I've also had the chance to re-affirm some truths, as well.

One of those has been the importance of family.

I've always been very close with my family.  I'm blessed to have two parents who I admire and respect as people and as friends, and two sisters who are truly my closest friends.  My middle sister had the first grandchild in our family just four days before Cora was born.  My mother, of course, flew to Vermont to be with them, while the rest of the family began planning trips for a few days later.  All the time they were waiting for Cora to arrive.  But my husband and I had planned to have a home birth with only the attendants present, and then to celebrate the first several days of her life at home alone, a newly hatched family of three.  And then Cora arrived and all my expectations shifted.

While my family knew I was in labor, I didn't call them until late afternoon the next day, several hours after Cora had arrived.  In the time in between, I was recovering from childbirth and reeling from the arrival of a baby with a secret that had rocked me to the core.  Although I recognized the features of Down syndrome in her eyes the moment they lay her on my chest, I held out hope that I was wrong until my midwife "broke the news" after examining her.  And when I had my worst fears confirmed, some of my first thoughts were trying to figure out how I would tell my family.  So I waited until the bustling commotion died down and the midwives were leaving and then called my mom and sister.  I really don't remember what what was said.  And even though I was scared of what their reaction would be, I do know that they told me that they loved me and they loved Cora.  And things felt better somehow after that.

Within a day, both my parents had traveled in and my youngest sister was on the way.  They stayed with us to help out while Cora was in the NICU, and then again during her surgery.  And of course we've had plenty of visits in between.

And although I knew that my family would be so important after having a child, I didn't really realize how important.  How can I even quantify how much they have helped and supported me?

And, even more, they are so important to Cora.  My sister Mira shared some beautiful thoughts a few months ago (that Mira... our family's baby but oh so wise).  She told me that Cora's gift is that she is charismatic and captivating and draws people to her.  How it's her gift to us and also her survival mechanism, in a way.  She went on to say how important that was.  How important it is that Cora has the love and support of family and those around her, because she needs that little bit extra.

And boy does she have it.

Cora with Grammie and Mira late one night in the NICU while I was at home in bed.
They were all partying because they got Cora to take a FULL bottle (quite the feat!) 
Itty bitty Cora getting some good Mira loving.
Look how much her Grammie loves her!

Fun with Grandpa Phil!

It was pretty exciting to meet her Grandpa Mike!

 The wacky MacDonald clan. Yes, Cora fits right in!

Favorite Auntie Dana loving on her niece.

Cora's cousin Kai is very exciting!

So I want to say thank you to my family.  Thank you for being so wonderful to me.  And thank you for loving my baby so.

Side note and apology to Favorite Aunties Erin, Tara and Ariel:  I am sorry you're not pictured here.  We need some pictures STAT!

Monday, October 24, 2011

31 for 21- Day 24: Costume Junkie

A little confession time here:  I admit it.  I get a high from dressing up in costumes.  I pretty much always have.  My mama is a thrift store queen.  And she is a bit of a costume junkie herself, so there are many costume boxes in my mother's house.  When it's time for Halloween or any other event that inspires us to get all decked out, going through my mother's boxes is an adventure in itself.

I'm guessing Halloween 1987 or so...
Me (the cat), sister Erin (Kid Terrific) and sister Mira (Cute Witch).

My own costume box is fairly minimal in comparison.  I've got some odds and ends from here and there, but it contains a lot of pieces from costumes I've put together over the years. Here are a few of my favorites:

Doll costume on Halloween day maybe 3 years ago. 
We didn't even go out but just answered the door for trick-or-treaters.

New Year's Eve a couple years ago, me and the sisters again.  
Why are we dressed like this?  Why not?
(Left to right, Mira, Erin, me)

Mardi Gras night on the Legendary Rhythm and Blues Cruise. Fun!

One of the best costumes we did: The Flintstones and the Rubbles, Halloween 2009
I made the Rubbles' costumes and Christine made the Flintstones' costumes.
(Left to right: Nick as Barney, me as Betty, Christine as Wilma, Shane as Fred.)

And my main claim to fame:  the BEST COSTUME EVER!!
Smurfette about 6 years ago.
Yes, I put this together myself:  blue liquid latex for upper body, makeup for face, tights for legs.
Overall effect:  priceless.  But it was not fun to remove.

This year it's pretty exciting that I get to dress up Miss Cora. Although I've seen some adorable little pre-made costumes out there, I couldn't help but want to craft one up for her.

So here's a sneak peak of the costume pieces, although I feel like it's cheating if I post the pictures of her wearing it already...  oh but they're cute! 

Antennae headband, made from pipe cleaners and felt ladybugs.

Handmade tulle tu-tu with black puffball dots.

Bodysuit, made from a white onesie dyed red, with cut-out felt dots glued on.

It may have taken several hours to make, and whether it's really that much cuter than store-bought is a matter of opinion, but it's much more rewarding for me.  And I can't wait to post pictures of my cute little Bug.

Saturday, October 22, 2011

31 for 21- Day 22: Make New Friends

As I've written before, one of the wonderful things that Down syndrome has given us is the privilege of meeting some incredible people.  It's important to me that Cora get to grow up with friends and peers that have Down syndrome, as well as friends who are typically-developing.  And I admit that it's also been helpful for me to make friends with other parents who have "been there," especially those with kids a little bit older than Cora.

When Cora was 10 weeks old we went to a small local gathering of a few families who had connected through the Babycenter Down Syndrome Board.

It was there that we met Susan, Paul and Anthony.  Little Anthony is almost 2 years older than Cora, so he's able to show her the ropes a little bit.  Or at least he will be able to once she gets over her shyness around older boys...

Okay, super goofy photo of me on the left, 
with little 10 week old, NG tube Cora and little Anthony sitting next to her.  
With cameos from a couple other little cutie friends too...

We've met up with this lovely little family a few times, and thoroughly enjoy them every time.

A couple of days ago we all met up for dinner and some microbrews to catch up.  As always, it was  a pleasure.  Anthony got to zoom around a bit and enjoy a grilled cheese sandwich, while Cora sampled some applesauce and pickles.

Miss Cora sat in a big girl restaurant high chair for the first time and had a blast.  By the end of the night she was cracking us up with her excited antics, and stayed up way past her bedtime.

You can read about the adventures of Anthony and his family on Keeping Up with the Carsons.

Just one more great thing that Down syndrome has brought into our lives!

Anthony and Cora enjoying their night out on the town.  
Okay, so maybe they don't look super thrilled at the moment....

"You see, Cora, when you're big like me look what you can do!"

"That may be true, Anthony, but there are some advantages to being little too..."