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  Believe it or not, a lot of the information that is spread about Ds is still out of date, inaccurate and very degrading.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.

Wordless Wednesday

Happy 5 Month Day

Miss Cora is now 5 months old.  And all of a sudden, she seems so big.  I put her in her baby bathtub today and was shocked to see how much of it she now fills up.

At her weigh in today, she hit 12 pounds.  Wow!  She's getting to be such a big girl.  It is, of course, wonderful and exciting, but also sad, as I think any parent knows as they watch their baby grow older.

Today we went for a play date with some friends from one of my favorite online places, the Babycenter Down syndrome board.  We met up with little Brooklyn (9 months), Anthony (2 years) and Eloisa (6 weeks) and let the little ones eat, sleep and play while the mamas had some nibbles and chatted.  It was our first time to meet beautiful Eloisa, and we're excited to get together again soon with these new friends.

Cora and Brooklyn

Cora, Brooklyn and Anthony

Cora, Brooklyn, Anthony and Eloisa

Euphoria

 Lately I've found myself all a-twitter with the joys of being a mother.

And in a way, I keep waiting for the anticipated "realities" to set in.  Always one to research what it is I think I'm getting into, I read countless books on pregnancy, childbirth and parenting, as well as some on transitions into motherhood.  And I definitely expected to be challenged, emotionally, physically, spiritually and to have to revise my sense of self and my identity.

Now I know that it hasn't been all roses.  Perhaps my earlier posts emphasized a lot of the positives, but there was also a lot of pain, worry, fear and anxiety when in the throes of dealing with all Cora's health issues.  And now I think I may be in that euphoric state that's often described after childbirth, when you almost forget the pain.  You don't really forget, people say, but perhaps the pain just doesn't seem to matter much when you have your beautiful baby in your arms.

That's how I feel right now.  It's comical, in a way. Especially since I know that I didn't have a particularly easy delivery.  And I also know that Cora's first three months were much harder than my labor.

But I feel now like all that is fuzzy.  And even more than that, I recognize that the first few months have certainly influenced how I feel now.  It's like I'm in the honeymoon stage of mothering.  That after all that stress and all that worry, the day to day experiences feel like bliss.  I can't seem to get enough of my little girl.  I can't get over the strength of my emotions.  I can't really imagine wanting to do anything else.

And even so, I admit to having had a few moments recently when I've had hints of discomfort with Cora's Down syndrome.  I've had some instances of wondering if and when strangers will be able to "tell" and I've worried about starting to get pitying looks and comments.  I've watched adults with Ds and have worried about my girl's future.

But when I look at Cora, all I can see is Cora.  And she is doing so well right now.  Developmentally, she is largely on track.  Socially, she is a joy.  And her previous issues with feeding that were all-consuming are no longer plaguing us (at least not right now.)

As much as I know that we will experience speed bumps along the way, things feel so good right now.

When I sit down and think about it, questioning whether I'm steeped in denial, all I know for sure is that parenting happens day by day.  We don't know what the future will bring, but we do know how much we love our little girl.  When I feel worried, I just look at her and my concerns largely slip away.  Because we can't foresee the difficulties we or she may face.  But we can continue to love and support her now and take it step by step.  If that's naive, then so be it, for now.

Where are the Words?

 Where are the words that I'm looking for?  That remarkably powerful feeling of pleasure mingled with pain that fills my chest with an ever deepening ache.  The feeling I have when watching my daughter restlessly sleep, eyes closed and whining when she doesn't feel me next to her, only to calm with the presence of a weight beside her.

 Where are the words?

"Love" must be what I'm looking for.

But it feels so different from any love before.

I wonder if the feeling a baby has for her mother compares.  I don't remember the days when I was so inextricably intertwined with my own mother.  When I depended on her for everything.  I hope that a baby knows this feeling.  But perhaps she can't, quite.  Since a baby has no comparison, knows nothing else.

I, as an adult, know so much else.  But now I have the incredible honor, the joy, the remarkable beauty of getting to know this love.  Sometimes I feel that I might just disappear in it all.  It's hard to imagine that my feelings will grow and change.

For now, I am letting myself be in awe, allowing myself to revel in the small moments of watching her sleep, holding her little hands, smoothing her soft hair, kissing her sweet cheeks.

Sleep, baby, sleep.

Prayers for Uncle Rob

 We've just heard the amazing news that my uncle Rob has just gone in for a double lung transplant surgery this evening.  This is something we've been waiting and praying for for some time.

Right now I can't describe the love I have for Rob.  There are way too many other thoughts racing through my mind.   He was like a second Dad to us and has always been a great friend.  So all my love is headed to him now, and to Marianne, Kelsey and Nathan as we all wait for the surgery to be behind him.

And only a couple months (wow, exactly 2 months from the day from Cora's surgery!) after our Little Beanie's big day, it brings back so many of those feelings.  And I remember how on the morning of her surgery I was getting her ready and washing her chest when I felt suddenly at peace in a way I hadn't the day before, when we'd sent her off to the surgeon, only to have her procedure postponed.  In retrospect, it was as if there was a voice (You know who you are) that told me that she was in the very best hands, that all was as planned, and that she would be OK.  I've thought about that quite a bit in the past couple of weeks.

And now I ask for that yet again.  I pray that Rob be in the very best hands, that the surgery be swift and perfect, and that the recovery be complete.  I love you Uncle Rob.