Wednesday, August 29, 2012

A Few Words from Cora

Hi guys!  Cora here!

Mama said I could talk to the blog people today.  I figured it was a good idea, since Mama probably won't fill you in on all the important things like I will.

Let's see... we've been having a lot of fun here.  After we got back from our LONG trip in the car to visit people, things have been pretty great.  I got to do a whole bunch of new things. 

Like riding a bike with Daddy. 

Yeah, that's fun.  But I really don't like it when they put the helmet thing on me, or when they strap my feet in.  I like to wave my feet around.  It feels so much more natural when my feet are up by my head, you know?  But once Daddy starts riding, I like it.  It's so much more exciting than the car or the stroller.  We even went on a long ride to the pool the other day.

Yeah, the pool is still my favorite thing.  Daddy taught me to swim when we were in California.  Well, he said it's not really swimming, but it's close.  Daddy thinks I am the best swimmer ever.  I paddle my arms and kick my feet and splash.  I get to do a lot of standing at the pool and have started to figure out how to move my feet to get somewhere.  Mama said I am learning to cruise in the water.

But the best part was they finally took me on the waterslide.  Mama was worried since she said they don't know if I have atlantoaxial instability, whatever that means.  But she tested the slide and said it wasn't too bumpy so I could go.  So I went with Daddy.  The first time it went so fast and I had to grab onto Daddy's arms.  But the next times were easy!  I got to wave my arms around and laugh.  And Daddy held me up out of the water when we came out at the bottom.  So fun!

Let's see... what else?  Well, we've been reading lots of books.  Mama put all my books on my own shelf so I can read them whenever I want.  I'm really good at taking them off the shelf and every time I scoot over to read they're back up on the shelf, ready for me again.  It's my favorite thing to do at home.

Well, that and signing and singing.  I'm getting better at signing and can sign at least 25 words that my mom understands.  But sometimes she doesn't seem to know what I am trying to sign, even though it's SO obvious.  And I've been practicing this whole talking thing too.  You know.... animal sounds, words, just trying to say whatever Mama says.  It's pretty hard though, so I don't practice all the time.

And I can't forget swinging!  Woo hoo!

Oh yeah.  One more thing... I have been having fun practicing standing up.  Now I can pull myself up using Mama's thumbs.  It is so much fun that I want to do it all the time.  And yesterday, when Mama wasn't listening to me, I scooted over to her and pulled myself up to stand all by myself!  Yeah, she was pretty surprised.  That was funny.  And then I climbed up onto her lap.  Ha!  Take that, Mama!  Now I can get up there whenever I want!  He he!  I'm pretty good at climbing onto her when she's lying down too, so now I can wake her up whenever I want! 

Mama thinks this is pretty cool.  She says I am making progress, slow and steady.  She's pretty happy.

Well, that's all.  Mama said we're going to Canada soon to visit, but I think that means more time in the car.  I'll make sure she tells you all about it.

Bye for now, blog people!

Tuesday, August 28, 2012

Gasp! I'm a Mom.

Last night after Cora had been tucked into bed, I paused for a moment on the deck outside.  Breathing the cool late summer air, peeking into my vegetable garden, I had a moment where I felt so independent, so free, so me.  This kind of moment would be insignificant if I weren’t a mother; a mother who is constantly tethered to another small life; a mother who seldom has the opportunity to take a breath that doesn’t involve a goal or a purpose, constantly propelling me toward some task.

In fact, in that moment, I felt so quintessentially independent that I immediately experienced a sensation that I’m sure most first-time moms have experienced: 

the mind-bending and shocking realization that I am a mother. 

Yeah, I know that Cora is 19 months old so I should be pretty used to my new role by now.  And most of the time I am, so much so that it feels like the only identity I’ve ever known.  Yet, in this moment I was somehow stunned by the thought, “I am a mother!”  And then, “I am a mother to a child with special needs,” followed suit.

Suddenly, I felt overwhelmed.  That free and easy breathing I’d enjoyed a moment earlier now felt tight in my chest, as a wave of anxiety rolled over me.  

The sheer weight of the responsibility was suddenly heavy.  The to-do list that has been spinning circles in my head over the past week started to spin a little faster, all of it seeming so vast, so impossible.

The transformation into motherhood is something profound and universal, yet so individual and isolating at the same time.  As much as you prepare and as much as your friends try to explain, it’s just not something you can really understand until you’re there. 

As I was waiting to welcome Cora, I remember starting to resent the comments other parents would make.  “It’s going to change your life so much,” “You have no idea what you’re getting into,” “Blah, blah, blah, blah…”  Now I understand what all those people were trying to say.  But there’s really no way for an expectant parent to really understand that fundamental shift, or to know how it will uniquely affect them.  I feel like laughing at innocent little pregnant me, blithely waiting for my life to change.

Yes, I am changed.  No, I don’t get too many moments just for me these days.  But my life is not completely overwhelming, either.  I guess like anything, you just live each moment one at a time, one decision at a time, one or two or three tasks at a time.  Is the responsibility frightening?  Yes, sometimes I admit that it is.  Is it even more frightening because my darling child has Down syndrome?  Maybe.  I can’t really say, since I don’t have another experience to compare it to.  I imagine that some of my concerns aren’t shared by parents who only have typically-developing children.  But many are.  Will the responsibility of being Cora’s parent be lifelong?  Most likely (and hopefully).  But all parents feel that way, I believe.  Maybe she will need me more and longer than other kids will, but maybe not.  The truth is, I don’t know.  Only time will tell.

But I do know that with this awesome responsibility has come a lot of other awesomeness too.  Would I want to erase my worries or obligations or any of the fear and heartache that my introduction to motherhood has brought?  Nope.  Not for a second.  Because then I would surely have to erase a part of Cora, and that I would not be willing to do, even if it meant sparing myself some pain.

But I must admit that I wouldn’t turn down a few more moments to breathe.  Maybe next time I get the chance to have some time alone I won’t feel like it puts me at odds with myself.  Perhaps one of these days it will feel natural for those parts of myself to blend. 

In the meantime, I’ll try to just take one day, one moment, one breath at a time.

Photo courtesy of Shon Taylor

Monday, August 20, 2012

Post-Vacation Blues

Today was our family's return to our "normal", post-vacation lives.

And, I think, like the end of any good vacation, there is a certain sadness about it.

It was sad to say goodbye to Nick this morning, knowing that it'd be just me and Cora together again all day.  I must admit, I got awfully used to having a second full-time parent around, especially one that wasn't busy working late from home and taking classes.  I think I actually got over the small nagging feeling that I have every time I am not the one actively engaging with Cora.  You know that feeling?  That little ball of guilt that you know shouldn't legitimately be there, but that you can't help feeling anyway?

Yes, it was definitely nice to have a full 2 weeks away from our typical day-to-day to share with our little family as we trekked down to visit family and friends. 

The last time Nick took a comparable amount of time off work (3 weeks, to be honest) was when Cora was born.  I remember thinking how great it would be for him to have 3 weeks away from work to bond with her and to get used to being a parent. For all of us to adjust to our new roles.

But with Cora just getting out of the NICU as he returned to work, it just didn't feel right.  As happy as we were to get her home, we were both afraid to leave me home alone with her, especially with all her feeding difficulties, the NG tube, her horrific reflux, heart failure, medications, and her upcoming heart surgery.  Thank goodness Nick's boss ended up letting him work from home until her surgery.  But even so... certainly not a vacation. 

Today Cora and I got back into the swing of a typical day.  For some reason I had technical difficulties at work, so I couldn't log in to do my usual work during her naptime (I'm sure I have a ton of catch up to do), so instead I got to mop the floors and finish my car-seat cleanup.  We even went to the zoo for a couple of hours, where Cora got to practice her new pointing skills and even pet a box turtle with her little pointer finger.  Yes, life has gone on like before.

Daddy Monster and Baby Monster are just finishing up their evening wrestling match with Baby Monster still showing off her impressive and increasing vocal skills.  Jammies are on, dinner and dishes are done.  Time to get this show on the road and wrap up the day.

Ah, life goes on.

Aren't they the sweetest pair?

Sunday, August 19, 2012

What is That Smell?

Warning:  Not for the faint of heart.  Please skip this post if you are at all squeamish.

We'd all been grumpy that morning.  Nick had been up since about 2:00 am, unable to sleep.  Cora woke me up at 5:00 am, ready to roll.   The evening before, we'd stopped at a Best Western oasis about two hours before we had planned on stopping, after a long hot day with few breaks.  So we were not very excited to be starting the next leg of our drive, now to be even longer than planned.

Sipping our Starbucks, we were about 10 minutes into our trip, when Nick started yelling.

"Oh my God!  What is that smell?"

Joking, he asked if it was me.

I, of course, thought he was being dramatic, probably since he'd been up for so long.  I told him it was probably just cows.  And I rolled my eyes.

But we didn't see any cows.  Just rolling hills in the morning light, with some little specks on the horizon that could have been cows.  Inconclusive.

Nick started investigating.  He checked his breath, not sure whether he brushed his teeth before getting in the car.  Nope.  He smelled our coffees, wondering if Starbucks had produced a skunky blend that day.  Nope, not there.  With a stuffy nose, he thought maybe his nose was playing tricks on him.

He then asked me if it was Cora.  "No way," I said.  "That smells like cows."

He adjusted the vents to recirculate the air, hoping any smell from outside would go away.  We thought that maybe it was getting better.

"Oh my God! I can't stand it," he moaned, minutes later.  "It has to be Cora!"

A few minutes later, we decided to check on Cora.  Worried about the magnitude of the smell, I started to get a little concerned, since I had put her into the car in only a dress and diaper.  I was hoping that if the odor was coming from her, we wouldn't be dealing with much of a blow-out.

We couldn't see into the backseat since Cora's new carseat position would allow only the DVD player or the mirror and of course we chose Signing Time, so we really had no clue about what could be transpiring.

We took the next exit and pulled into a Shell station.  Nick got out of the car first and opened Cora's door.

He immediately started yelling.  Then laughing.  And yelling again, this time telling me to get the camera.

When I peaked in the backseat, unsure of exactly what I would see, I was completely unprepared for the sight of my girlie looking back at me.

There she was, sitting there happily, sucking on her foot.  


Literally head to toe.  Hair, face, mouth, arms, hands, fingers, dress, legs, feet, in between her toes.   It was obvious that she had been channeling her inner artiste. She'd managed to showcase her finger-painting skills all over Daddy's bag, over the back of the seat, the seat-belts, and of course, all over herself.

We sat there open mouthed, no clue where to begin.  

Armed with a beach towel and wipes we began the clean-up, pulling her out of the car, after wading through massive amounts smashed into the buckle.  We started with her head, mouth and hands.  Scrubbed her eyebrows and her hair.  Scrubbed in and behind her ears.

It was about that time that Nick got an eyeful of a woman leaving the gas pumps and watched as she took in the scene.  He said it was like she'd just learned she was on "Candid Camera."  Jaw dropped, mouth in a perfect "O", eyes wide.  Horrified.

Yes, horrified.

It took a pretty efficient 20 minutes and 2 containers of wipes to clean her up enough to continue on the trip. I will never forget the image of looking over at Nick and Cora (while I was cleaning the back of the car), and seeing her on her stomach on a towel, with Nick pouring the contents of his water bottle over her hair, scrubbing her white little skin pink.

Even though it was ridiculous, I found myself laughing throughout the rest of the day.  Even when we discovered not too long afterward that we had gone about 45 minutes off course and had to backtrack another 45 minutes to get to I-5.  The rest of the drive was long.  And hot.

We're finally home now.  At last.  It may take a little while to finish the deep clean and sanitize all the laundry, but we made it.  Now I just wish I could sanitize my memories.

I totally debated about whether to post the picture.  It's probably horribly inappropriate. I'm sure there are people who would thank me for not posting it.  And in truth, it doesn't even remotely do justice to the actual scale of this poop.  I compromised by posting a link to the photo.

So for those of you that actually want to see the photo, be warned.

CLICK HERE for photo.

And just be glad that you can't actually see the toes that were in her mouth.

Wednesday, August 15, 2012

Beachy Days Fading Fast

We're getting ready to leave San Diego in the morning.  I am feeling wistful.  Time goes by so fast and it'll be sad to have this trip behind us.  But it's been a blast.  Today we spent the day visiting.  Breakfast with Grandma, lunch with my former boss and co-worker, dinner with my beautiful friend, her husband and their adorable 1-year old.

We'll be doing a couple long days in the car over the next three days, probably moteling it one night and camping for our final night before we get back home.

Since I imagine I won't be posting until we get home, I wanted to post a few more beach pictures of my sweet little Southern California loving-girl!

Great Grandma Love

Our trip continues.  We spent a few days with Nick's aunt and uncle in Santa Barbara.  The beauty of their home was surpassed only by the fun we had with them: visiting out by the gorgeous pool looking out over the Pacific Ocean, or over dinner at one of the local restaurants.  Cora was spoiled, of course, and after a bit of a warm up period, managed some good snuggles.  Especially with Aunt Carolyn. 

Cora continues to surprise me with her happiness to be on the road.  She doesn't seem phased by the different rooms we've been in, or the new people she meets.

We've been in San Diego for the last few days, mostly here to visit with my grandmother.  I have really enjoyed my time visiting and am so happy that she has gotten the chance to meet Cora. 

Nick and I lived in San Diego for three years before moving to Portland almost 5 years ago.  During that time I was lucky to get to know my grandmother better.  Since we lived in Canada, then Texas, and then Washington State while growing up, we never got to spend very much time with my Dad's side of the family.  So I really loved having the chance to try and make up for some lost time while living down here, seeing Grandma and Aunt Louise and my cousins.

Cora was a hit at the retirement home, bringing smiles to the residents who stopped to get a peek of her shy little smiles.

Grandma's friend Judy was visiting too and scored some Cora time.

Grandma, Judy and Cora and Aunt Louise

Sadly, I am not really designed for the California sun.  The rain and the green and the trees of the northwest are definitely home, but I do miss it down here sometimes.  Even so, I'm feeling a little bit sad as we think about packing up our things to start the trip back up to Oregon tomorrow.  It's sad to say goodbye.

Time flies when you're having fun.

Wednesday, August 8, 2012

Perfect Day

 In order to avoid the 105 degree heat today we took a quick trip to Morro Bay, where it was at least 30 degrees cooler.

We picnicked on the grass next to a playground, then walked along the strip to get ice cream.

Next came the beach, where Justin and Olivia caught sand crabs.

 And Cora ate sand.

Cora wants sand to be the new food group.  Or avocados.

 Then Nick provided me with the biggest laugh of the trip to date.  After deciding to clean the sand from Cora's face and mouth, he came back with her cup.  He proceeded to remove the lid and then dump the water into the lid.  He ignored me as I asked him what he was planning to do, when suddenly he threw the cup of water right into Cora's face!  He seriously thought this was the best course of action.  Seriously.  He wasn't trying to be mean or funny.  But I just about fell over and peed my pants.  I will never understand men. 

Cora was pretty shocked too, but handled it with grace.  And admittedly, after a couple swipes with a wipe or two, she was mostly clean, if a little bit blotchy.

A collaborative and incredible feast of grilled fish tacos at the house, where Cora went crazy on some guacamole wrapped up the day.

A beautiful, beautiful day.  Thanks to Justin, Beth and Olivia for a great time.

OK, not the greatest group shot. Cora getting bored, Olivia looking away and Beth taking the photo. We tried.

This Little Trooper

Cora is now officially my favorite little road-tripper.  During the entire day yesterday I think I heard only 1 little whine, when Signing Time ended for a few minutes.  Other than that, she sits happily in the backseat, content until we let her out of her dungeon.

And yes, I do mean dungeon.  We have a little car.  Strapped on top is a small Thule cartop carrier stuffed with camping gear.  Next to that her stroller is tied on, along with her travel high chair, and Nick's current experiment: a solar panel hooked up to a battery.  You know, in case you need to air up your aerobed or charge your laptop in the redwoods. Just what you never knew you needed.

Inside the car is packed to the gills.  Little girlie's carseat is rear-facing in the middle of the backseat, with coolers and bags strategically stacked around her so that nothing will fall on her if things shift.  And they are literally stacked to the ceiling.  So our sweet girl is essentially in a dark little dungeon, left alone to sign to herself, chew on her Sophie and be entertained by the ever-present Signing Time DVDs.  We've thought about rearranging, so she can be by the window and actually see out.  And we may actually do that.  But with her little sun sensitive self and the current outside temperatures in the 100s it hasn't seemed urgent to rearrange.  So for now she's rocking her little backseat cave.

Today is Day 5 of our trip.  Yesterday, we drove for a few hours and arrived here in Atascadero, California to spend time with one of Nick's childhood best friends, and his wife and daughter. 

We enjoyed last night eating great food and catching up with good friends.  Cora is getting used to her new 4-year old friend Olivia and is tolerating the 2 chihuahuas pretty well too. Since it's ridiculously hot, we'll be taking a 20 minute drive to the beach for the afternoon.  Yes, California at its best!

Monday, August 6, 2012

Road-Tripping- Northern California

Day 3 of the road trip we've been planning for ages.

And yes, it's honestly been a lot of time in the car.  Because, with a baby in tow, a 5 hour drive becomes an 7 hour drive.  But I have to send a thank you card to Rachel Coleman, because Baby Signing Time has been saving this trip, keeping Cora entertained in her rear-facing carseat on the portable DVD player.  This girl is rocking the road trip from all angles.

We spent the first 2 nights in the redwoods, camped out beneath the trees.  I guess I had a pretty specific picture of our redwood adventures in my mind, complete with perfect picturesque photos of Cora beneath the giant sequoias.  But of course, my lack of photography skills and lack of a decent camera had other ideas.  So I got mediocre pictures but still managed to have a great time.  

My delectable girl apparently made a delicious feast for a handful of mosquitoes, and her sweet little face is now covered with little pink welts, but she hasn't seemed to mind.

Planning a trip via the internet these days has it's downside, though.  Today, despite the quiet misgivings I had as we made our way for a 45-minute detour off Highway 101 to find our next campsite, we trekked on.  With temperatures in the 90s (please don't find me too insensitive, since I KNOW so many of you are dealing with ridiculous temperatures this summer...) Cora and I and our heat sensitive, overly emotional selves were ready to arrive at our destination and take a dip in the long awaited lake.  But alas, the campground was virtually empty, dusty and dirty and crawling with creepies, the lake stagnant and full of clumps of things we had no desire to dip our toes into. 

Nick luckily saved the day for my red-faced little girlie, plopping her down under a faucet and letting her play in the water for a few minutes.

 We speedily packed our stuff and hit the road again, landing an hour or so later at a Best Western where we happily had a swim in the pool with a gleeful little girl, bathed her in a real tub, made ham sandwiches and tucked our happy little girlie into bed.

Internet access and a cold beer.  Complimentary breakfast in the morning without the work of breaking camp.  Aaah.  I admit that it feels so much better than a dusty patch of dirt beside a creepy-crawly lake.  I feel a little spoiled and elitist at the moment, actually, but am still happy from my perch.

Tomorrow we will drive some more and arrive at our next destination to visit one of Nick's best friends.  It's amazing how quickly a trip like this sucks up time.  What felt like a long 2-week trip now feels like a quick 2-week trip, and I find myself missing potential visits on the way, like meeting up with some blogging friends I'd love to see.

As it is, we have missed one heck of a party this weekend with my crazy Canadian side of the family.  Somehow I think they managed to have fun without us.

Until I post again from the road....

Thursday, August 2, 2012

A Good Cry: Summer Disability Series Blog Hop!

As the final post for the  Summer Disability Series Blog Hop, this week's assignment is to re-post a favorite post from the past. 

I had a hard time deciding on this.  Some of my favorites really just describe Cora's antics and the small details of our lives.  But I wanted to choose something a little more heartfelt.  Reading through my posts over the last year and a half, I chose one from November, when Cora was 10 months old.  

It may seem a little depressing at first glance, but what I like is that it discusses a resurfacing of my initial raw grief and sadness over Cora's diagnosis while allowing me to realize that acknowledging that sadness doesn't negate my pride, joy and acceptance of Cora.  It was my small way of learning to come to terms with emotions I had largely suppressed and allowing me to start getting over my own guilt.

A Good Cry

A few days ago, driving in my car, switching radio stations to find songs that suit my mood, I heard a woman on the radio give her story of the day.  I'd heard her stories a few times before.  Always a little sappy, a little sweet, a little heartwarming.  Sometimes you'd roll your eyes just a little.

She started telling a story of a little boy at a pet store looking at puppies.  When the boy saw a puppy with a limp, he told the shopkeeper he wanted to buy that puppy.  The shopkeeper tried to talk the boy out of it, and when the boy insisted, he then tried to give the puppy away free.  But the boy wouldn't hear of it and insisted on paying full price.  The man went on to tell the boy that the puppy would never learn to run and jump and play.  Then the boy revealed the brace on his own leg.  He told the man that he didn't run so well himself, and that the puppy would need someone to keep him company and love him as he is.  The woman on the radio went on to talk about recognizing value in people, things and animals that may not seem, at first glance, to be perfect.  (Her version was scripted much better than my own.)

And even though I wanted to roll my eyes, I found myself crying.

...crying because I so want my daughter to be recognized as valuable.  And I know that it may be an uphill struggle.  I know that many people wouldn't have chosen a child not viewed as perfect, and that ultimately, with modern prenatal testing, more and more people will be getting the opportunity to make that choice.  And they'll likely be making that choice based on fear, without the benefit of witnessing the beauty, joy, love and value that can exist in that child.  At that moment, alone in my car, the thought was so raw and so painful.

I turned off the radio and cried.

And then strangely, my emotions shifted, and out of nowhere I was struck with a glimmer of my initial grief:  the grief that tore through me when Cora was born, but that I didn't allow to stay.  Shocked, but unable to hold it back, I let myself cry, all the while feeling like I was somehow betraying my girl.  Through my tears I questioned how I could be feeling grief over something I love so deeply.  If I feel sadness, how can I expect others not to fear what I have, or not to have pity, let alone to recognize what a gift my daughter is?  How could I reconcile this startling sadness with the overwhelming love I have for this child that I would walk through fire to choose again and again?

A few moments later a sense of peace came over me and I was struck with gratitude.  Gratitude of course, for my beautiful girl and for the pure joy that she brings to my life.  Grateful also that I was smart enough and humble enough to recognize something good when I delivered her on my living room floor.

But grateful too, for that small moment of sadness that I shared with myself alone at a stop light: for allowing my defenses to bend for an instant, to let in my own worries and fear and sadness, still recognizing that it doesn't negate my love.  It doesn't counteract my fierce desire to protect Cora or to share her beauty with the world.  It is just a small part of me now.  Maybe a part that I didn't know was still lingering.  But it's a part I can accept for a little while at least, knowing that it'll get smaller every day, as it's eclipsed by my daughter's smile.