Off We Go

Today we're heading out of town on our way to Christina Lake, BC to celebrate my Grandma's life. It would have been her 80th birthday party, but is now her memorial and burial.

We're really looking forward to a week to get out of town and to spend more time with my family and friends.

And we get to see my sister Erin and little Cousin Kai again, as well as my sister Mira, who's been traveling for the past 3 months. It's crazy to think how little and different Cora was the last time she saw her Favorite Auntie Mira. I can't wait to see them.

Sorry that I don't have new pictures to post today, since we just cleared the camera's memory card in anticipation of the new images to come.

So we'll be back next week with stories to tell, I'm sure.

Operation Smiley Girl

My attempts to catch Cora smiling on camera are usually met with little success. She is fascinated by the camera, but just won't smile at it. But this afternoon I got several of her smiling at Nick. As you can see, he can make her smile like no one else.

After running a few errands getting ready to leave for our trip on Tuesday, we set up a towel and a beach umbrella in the backyard while Nick tended our withering garden. Cora had fun lounging in the shade playing with her toys and then rewarded her Daddy with some beautiful grins for his effort.

What a sweet Sunday.

Politically Correct

 When your child is born with Down syndrome a whole new world opens up.  At first that is a major understatement.  All the dozens of baby books you've previously read suddenly seem obsolete.  Now you have to pick out new books and learn things you may have never considered.

I will be the first to admit that when Cora was diagnosed with Ds I didn't know a thing about it.  I had never even met a person with Ds before.  So I knew that I'd need to learn and learn quickly.

If you're interested in learning about Ds it's important to seek out current and reputable information.  Believe it or not, a lot of the information that is spread about Ds is still out of date, inaccurate and very degrading.  And a lot of that information is sadly spread by doctors who counsel expectant parents.  (But that is another topic in and of itself.)

A good resource will advise you to use people first language when speaking of a person with Ds.  This means speaking of the person first, rather than the diagnosis.   A baby is a "baby with Down syndrome" instead of a "Down's baby." You will also learn that the term to use is Down syndrome (capital D lower case s) and not Down's.

This may seem trivial to some people.  You may wonder why language really matters.  But when suddenly people are speaking about your own precious baby the language they use becomes much more important.  Because you don't just see the "Down's baby" that the nurses refer to.  You see your baby.  And when people, even with the kindest of intentions, begin to make generalizations about your child or use language that makes your child seem less than worthy, it doesn't seem right.  Because it's your baby.  Not simply a "Down's baby" that can be lumped into a category consisting solely of generalizations and stereotypes.

Another distinction is between the preferred term "typical" versus the dreaded "normal".

This distinction seems rather important.  A thread on the Babycenter Down Syndrome board today posed the question asking why using the word "normal" is considered so un-PC in the Ds community.

And this is a question I've asked myself.  Do I really care whether someone says "Down's" or "Down syndrome?"  Does it really bother me if someone calls their "typical" child "normal?"

A number of parents weighed in, some stating that the distinction didn't seem important.  But others made some good points and gave perspectives that really helped me understand the uneasy feeling I get in my gut when my daughter is evaluated by whether she falls into the category of "normal."

One thoughtful parent stated that in their mind, "normal" is the way something is supposed to be; whereas "typical" is the way something usually is.  Someone else took it a step further and wrote that the connotation of the word is important.  That by calling a typical child "normal" we are calling our children with 47 chromosomes "abnormal."  And that "abnormal" is simply more hurtful.

Another posted that her child is not abnormal, but just has Ds. And I think that is the way I feel.  Cora is certainly not abnormal to me. She is the way she is supposed to be.

So do I really care?  Yes and no.  I can overlook someone not using the proper terminology, especially if the intention is still kind and the person doesn't know the politically correct distinctions that our community has made.  Perhaps I will even get more comfortable educating others as time goes by.  But overall, it is important to me that Cora is seen as a person first.  That she is seen as an individual. And using words that are respectful to her as a person is important to me.

I know that Ds is still unfamiliar to many people.  I can hardly blame them, considering where I was only 6 months ago.  But one of the gifts I received when I was blessed with Cora is the role of being her advocate.  I am certain that will come to mean many things throughout her life.  But for now I can start to convey what I am learning to the people in our lives.

And in all of this, I think the most important thing I've learned is what I know simply from knowing Cora.  I can't say that I KNOW Down syndrome now.  But I know what is important to me about Down syndrome.  At least so far.  And the rest I will certainly learn as I go.  As we go.

Sending our Love

 Heard the good news today that my uncle Rob, who had a double lung transplant 2 weeks ago, is finally waking up.  It's been a slow recovery with so many people praying.

Very happy to know that he is coming back from this ordeal.  My mom just flew to Edmonton today to be with her sister.  I wish we could be there too.

So we're sending our love to them from here.  Maybe some cute pictures of Cora will help.  I know that Rob loved reading this blog and seeing her pictures, so I will keep posting these knowing that soon he'll be looking at them again.  In the meantime I will look forward to the day my favorite uncle gets to meet my little girl in person.

A Few Words from Dad

Doesn't this just say it all?

Many of you have been reading this wonderful blog for several months now.  Leah writes a lot about Cora, obviously, because this is the Bean's blog, but rarely mentions poor ol' dad ;-(  I think it goes without saying that I'm here, learning, laughing, playing and enjoying the time with my family.  Not to mention I'm in most of the pics ;-)

But what have I got to say?  I am very proud of Leah and Cora.  That’s for sure.  And I am very proud of the three of us for being such a good little family.  You can be sure of that.  And I suppose I have a great deal to say in general about a lot of things (anyone who knows me will agree with that).  But I’m not going to ramble on about nothing.  I think when Leah asked if I would write a little something, I thought this would be a great opportunity to simply say how much I love my girls.

When Cora gets older and can talk, you all can ask her, “was your dad fun?  Was he silly?  Was he a goof-ball?”  I think she will answer yes to all of these questions.  As can be seen by the pictures that I will post today, most of the things Cora and I do together are goofy.  I think that’s something she and I have in common.

I took Cora to my sister Tara's roller derby bout a couple weeks ago (see the pink-eared pick above) and Cora was fine for a bit but she got a bit upset with the loud, booming speakers.  So we bailed.  I knew she was hungry so we went out to the campus of Whatcom Community College (an alum I am, hmm) and I fed the squirt.  We found a nice little rock that would house my butt, and we enjoyed the sunshine while Cora sucked down a few ounces of the goods.  Then we sat around on the nice lawn and played a bit.

That was a great weekend.  Then work, cleaning, hanging out with my girls, working more, cleaning more, sitting at a computer for many hours, hanging out with my girls some more, more work, and on and on...  Now, here we are.  Another great weekend.  And my first Father's Day!  Leah, Cora and I had a good weekend.  Good food, good fun, walks, and Cora got to do some new things.  Yesterday, we went to Mt Scott Community Center and swam.  It was great.  Cora seemed like she'd been there a million times before.  A pure natural in the water.

Today, we went on a nice walk and Cora took her first ride in a big kids swing (see below).  She handled it like I thought she would:  with great ease and little effort.  I am very proud of my girls, that's for sure.

So that's about it for me today.  I think it is really great that Leah can reach out to the world with this great blog.  It is so good for her. And I am so proud of all of you for reading it regularly like you do, laughing, smiling, and enjoying the words of my wonderful wife.  I can only hope that more people get involved with the community and relate more to each other.  It's a good thing, I'm sure of it ;--)

A Silly Night with Daddy

Last night was a first for me. First evening out with the girls without Cora. We spent a lovely happy hour sipping wine, eating food we hadn't made, and talking about our babies. Perhaps having conversations about other things will be the next step.

So Nick and Cora spent their own evening at home, and I returned to find these gems on the camera. Daddy is so silly.

90% or more

I've been thinking about prenatal testing for Down syndrome a lot lately.  We didn't have any prenatal testing, mainly because I never really thought anything could go "wrong."  And I guess I thought it wouldn't have mattered anyway.

There's a lot of discussion out there about the benefits of having a prenatal diagnosis.  Some wonderful members of my lifeline, the Babycenter Down syndrome board have an indispensable website, Down Syndrome Pregnancy, as well as a fabulous new book for expectant parents with a prenatal diagnosis of T21.  Following them online has been great.  To see them offering real and current information to parents who are continuing their pregnancies is so important.  Because, from what I hear, a lot of the information that is given to people with a prenatal diagnosis is out of date and presented in a very grim light. 

You see, a lot of people may not take the time to read the lovely blogs that I read.  To hear about Miss Ollie Faith, recently with her repaired heart and hear her momma's words.  Or read about Calvin and his family or any of the many parents and children I am lucky to be getting to know.  I am grateful to have access to these parents' thoughts and words and photographs and am excited about the growing community we are now a part of.   (Feel free to check out the list of blogs I follow on the sidebar.)

And sadly, more than 90% of parents who receive a prenatal diagnosis of Ds choose to terminate the pregnancy.  Right now I am listening to Cora babble in her bed, just awake after a good night's sleep, waiting for me to come in for my first morning kisses.  In a few seconds I will go in and see her beautiful little smile, all for me.  And I can't imagine not choosing to get to live with that smile.

It is heartbreaking that the decision about what life is worthy of continuing is being made every day.  Because how can you not think that this little girl is worthy of life?

There is a new prenatal test that will be available soon that should be able to diagnose Ds with a simple noninvasive maternal blood test as early as 8 weeks into the pregnancy.  And there's quite a bit of discussion about the likelihood that the termination rate will go up even higher, when people are afforded that choice so early into pregnancy.  Some are excited to think that the incidence of Ds could decrease dramatically with this new test.  But for many of us it is not without conflict.  Check out this article for more insight. 

But it is a painful thought to all the families that feel so blessed by the children that happen to have been created with an extra chromosome.  Because our children are worthy of life.  They are worthy of everything.