Monday, August 29, 2011

All Over the Place

I've been feeling the pull to write, to post pictures and to update this little blog over the past several days.  But I've also been feeling pulled every which way by all the happenings in our lives.

We hosted an end of summer potluck and outdoor movie night on Saturday, which was great and so much fun.  Yet in the midst of all the food, the tasty beverages, the popcorn and the people, I pretty much forgot to take any photographs.  Boo!  And all the photo ready moments too!  We had many of Cora's little friends, from 5 week old Gia to 6 year old Haley and lots of babies and kids in between.  Cora's buddy Anthony visited and charmed all the ladies.  And we had a flux of houseguests over the past week, from family members passing through town to some coming for the festivities. It's definitely been a whirlwind of fun.

Cora is currently snoozing away after a very long night, during which the 3 of us were awake more than we were asleep.  And I know I should be napping, or maybe logging in a bit of work from home hours, which can be hard to find when keeping my busy girl entertained.

But no, I am here sorting through pictures and typing out words.  I've had several posts in my mind over the past week, but a lot of topics seem too heavy for my fuzzy heavy-lidded self today.

So instead, perhaps I'll just post a few pictures from the past few days.

Riding on Daddy's shoulders at the park. Woo hoo!

Me trying to actually get pictures of Cora smiling, rather than reaching for the camera with her mouth in an "O".  I had to hold the camera out to the side and then talk to her.  Needless to say, the effort didn't produce the best pictures.  But here they are anyway.  I really melt over her smiles.

Cora has been fun.  She's still wary of strangers and can offer a pretty impressive pouty lip when excited strangers (or people that she hasn't seen in a few days, even) get too close for comfort, but she seems to be coming around a little.  She's been rolling over from back to tummy like crazy, once she finally picked up this skill a couple of weeks ago.  But of course, after months of rolling tummy to back, she seems to have gotten stuck, and must thus shout for help to get out of her inconvenient positions.

Our future computer geek (that is, if she takes after her Dad) playing with Grandpa 
and his new laptop.

Not sure who had more fun reading books.  Cora or her Favorite Auntie Mira.  Either way, both enjoyed the nice snuggle time.

And of course, Silly Daddy once again gets hold of the camera to capture Cora with her delectably delicious little feet.  (She seems to find her right great toe the tastiest of all.) 

We're planning our last camping trip this weekend with some good friends, and in between hope (fingers and eyes crossed) to get some good sleep, to finish my work projects, and to actually get in some quiet moments this week.  Wish us luck!

Friday, August 19, 2011

An Aching Heart

This week I've found myself often brushing back tears and offering my thoughts and prayers.  It seems to be a time of worry, heartache and concern all around me.  Reading through the blogs of the incredible parents and their beautiful children with Ds there are babies sick here and abroad, children lost, and many children struggling for their lives in a race to find adoptive families.

I've known about the charity Reece's Rainbow since shortly after Cora's birth.  They help to educate, connect and raise money toward international adoptions of children with Ds in Eastern Europe. Children who will very likely not live very much longer without getting out of their countries and into families that can offer the love and attention they desperately need. 

For months I read blog posts advocating or raising money to save these children and my heart would ache.  But still I wasn't ready to click on the links and see these faces.  I didn't have the courage to even look at the websites.  Such cowardice.  I guess the best explanation I can give for my fears is that it was still way too close to home.  Too hard for me to envision my own sweet Cora in the same crib, suffering the same fate, simply for being born with an extra chromosome in a different part of the world.  Too close to the worries I had for the life of my own baby.

Knowing that even here in the U.S. there is still such a long way to go for people like Cora to experience true acceptance.  Knowing that a great percentage of our communities still think of Down syndrome as a "disease" to eradicate, as something to be "taken care of" if diagnosed early enough in pregnancy.  We know that we will likely have to fight for inclusion in school and in our community, even though we've come so far. Knowing that the world still sees her as a second class person breaks my heart to think about.  But to picture her being chained to a crib without contact, love, medical attention or even real food is devastating.  And that is the situation that so many children are facing.

Now I am ready to click the links, ready to see, ready to read the stories of the brave, compassionate and wonderful souls that are doing their part to save the lives of some of these children.  But it still bruises my heart.  I am so thankful that there are people who are standing up to rescue these children who are worthy, who are valuable, who deserve a chance.

Next month our family is taking our first real step to advocate for Cora and for those with Down syndrome.  Perhaps it's a small thing, but we are participating in the Northwest Down Syndrome Association's 2011 Buddy Walk to raise awareness, educate and promote acceptance of those with Ds.  Even though it may be a small step, it has to begin somewhere.  Just by showing a small population of people how valuable a person like Cora can be, we can start to raise awareness.  Start to demonstrate to the world what we already know:  that she is worth it.  That people with Ds are a valuable part of our community and our world and that trying to get rid of these people is wrong.  And that much more needs to be done to help save the lives of children like Cora across the world, children that currently don't have Cora's opportunities.

I hope that more people can get the courage to visit Reece's Rainbow and learn about the children who need a chance to live.  Please visit Reece's Rainbow.  Even if you're not in a position to adopt a child, you can contribute toward the adoption of these children.  Or you can help to spread the word.  Follow The Blessing of Verity, the blog of a mama on her trek to adopt a little girl in an orphanage in Bulgaria.  Be brave enough to look at the faces.

And as a more local gesture, you can sign up to walk with us in this year's Buddy Walk.  Or you can make a donation to Team Cora Bean to support the NWDSA and raise awareness with us.

One step at a time.

Saturday, August 13, 2011

7 Months Old

We plopped Little Beanie on our baby scale yesterday. Yes, we have a medical office grade baby scale- invaluable when your little one has heart failure and you're counting every ounce gained...  Now that she's post-surgery and thriving like crazy we don't really need to weight her that often, but curiosity often gets the better of us.  This week I noticed her little cheeks getting fuller and her double chin starting to get softer.  The rolls on her arms and legs seemed extra squishy and lifting her seemed to take just a little extra oomph.  So I told Nick that I thought she had gained quite a bit and we should put her on the scale.

Lo and behold... 14 ounces gained in 2 weeks!  In 2 weeks!  Who is this crazy weight gaining baby?!  We were told that she would most likely gain weight more slowly than typical babies.  Plotting her growth on the Down syndrome chart she started at 25% and has been in the 50th for the past few months.  And now she's up to about the 70th, working her way up to almost 10% on the typical growth charts.  7 months old and 14.5 pounds.  That may still seem small, but I know of several little sweeties with Ds who are the same weight and are about a year older than Cora.  And here I thought she was going to be a small baby.

Now I wonder if her growth will slow down or if she's gonna keep putting on the pounds.  Am I over-feeding this little girl?  We feed frequently during the day since she goes about 10 hours at night without food, so now I've been trying to stretch out her feeds a little bit at a time.  But she just won't wait sometimes.  Must be a growth spurt, so I'm not gonna let her fuss and starve. 

I've had some concerns about whether she will overeat in general and whether she will experience decreased sensation and thus decreased ability to know when she's actually full.  Although this can happen with Ds it doesn't seem that different from a lot of us typical folks (me included) who just love to eat.  This doesn't seem to be the case now, but I'm not sure how to tell.  Since this is my first baby I don't have much to compare her to.

For now she is healthy and happy, if a bit clingy.  She's decided she likes squash, is allergic (we think) to peas, and really doesn't like carrots, although she gave them a fair shot.  The jury's out on bananas.  She's forgotten how to use her straw cup after a couple weeks of behaving like an expert.  She's gaining trunk strength every day in her efforts to learn to sit, and still isn't very motivated to roll over, unless it's to get out of tummy time or to get onto her side to nurse lying down.  She's starting to try and push herself around with her legs when on her tummy, but isn't quite sure about it. She loves to hear her own voice, especially early in the morning when we want just a few more minutes of sleep.  Her favorite toys are mason jar lid rings and a cold beer bottle. Aren't we great parents?  In our defense, we don't let her actually drink the beer...

She is 100% adorable cuteness, getting bigger all the time.  Growing up.  Yikes.  7 months of pure love.

Wednesday, August 10, 2011

Too Sensitive?

Browsing through my favorite support forum this morning I read about one mama's feelings in the midst of a bit of drama surrounding the topic of disability slurs.  She was hurt that a Facebook "friend" berated her and then unfriended her for expressing her feelings.  And it was about use of the "R" word and some derogatory jokes about Ds in a new movie and in general usage.  She was accused of being too sensitive and was told that she was "just grieving" about her loss of a "normal" life since her son has Ds.

I guess in a world where being politically correct seems to extend to just about every topic and it feels impossible to be forever "sensitive" it really can start to feel like we're just overdoing it in the politically correct arena.  To think that perhaps it's time to insist that we should just ignore what we don't want to hear and stop taking it so personally.  That when you hear the "R" word being used to describe something that is silly, or inane to just accept that it has taken on a different meaning than the one originally used to describe people with cognitive disabilities.

But as much as it seems like we should just ignore it, it really does sting.  It's been hard for me to describe why those words and those slurs make me shiver. And the best explanation I have found justify my feelings can be read here in this brutally honest post about the "R" word.  Knowing that these put-downs are being made toward a group of people that are less able to defend themselves makes it seem all the more mean-spirited, even when the intent is a joke.  Superimpose that over my desire to validate my own daughter's worth with the small steps I am taking taking to demonstrate the beauty of my girl and of Ds one blog post at a time.  I am just a proud mama who wants the world to recognize her baby's value in a time when so many seek to eradicate Ds like a disease we can vaccinate against.

One of my main worries for Cora's future is how she will be perceived by others.  Despite the fact that everyone who knows her discovers that (even at such a young age) she is so charismatic, smart, charming and beautiful, I know that she will face discrimination.  And that hurts my heart.  Because the evidence of her extra chromosome is written on her face, it is recognizable, and people respond to that.  Even now I know, because I have seen the pity in people's eyes when they first learn that she has Ds.  I wish it weren't there. 

So even if you think we are "too sensitive", please try to see the other side if just for a second.  I think you may just get a glimpse when you see little Beanie's smile.

Wednesday, August 3, 2011

Almost Wordless Wednesday

I know I am biased, but isn't this the cutest face you've ever seen?  With little "sticky uppie" hair and her favorite "bracelets" on her wrist... 

I'm going to go spend the rest of my day marveling in the cuteness of my girl.

Monday, August 1, 2011

No More Peas

Last night we introduced peas to Cora. She did so well with squash that we thought, "No problem."

All started out well.

After Cora was ready to be done Daddy snapped these gems.  At the time they must have seemed funny. I guess we didn't sense the foreshadowing...

A couple of hours later she started a 4 hour vomiting spree.  We don't think it was a bug, because there was no fever or other symptoms.  And a few hours later she finally stopped dry heaving and was able to keep down liquids.

It was a long night at Cora's house.

I guess we'll be throwing out the rest of the peas.