My Connection to Disability

What is your connection to disability?

This is the question put forth today by Meriah, one of my all-time favorite bloggers, mamas, writers and all-around people that inspires me to think and to feel.

There is a simple answer to that, of course.  My obvious connection is my daughter, Cora, who has Down syndrome.

But there is probably a less obvious answer, as well.  An answer that I am still discovering.  After Cora's diagnosis, I initially felt overwhelmed and unprepared.  What did I know about Down syndrome or disability?  I had never known anyone with Down syndrome, and had never been around people with disabilities much at all.  In fact, I'd been criticized by my dad for not being very patient for people who weren't as smart as I was.  His criticism didn't apply to people with cognitive disabilities, really, just ordinary people that may have made me work a little harder.  But still, it gave me something to think about, especially after Cora was born. 

I was taught to be kind and accepting toward people who are different.  After hearing my dad's stories as a little girl I felt it was my job to be friends with the kids that didn't fit in (funny perhaps, since I was so shy and tiny myself and often took a while to make friends after most of our moves).  I remember a friend in second grade named Robin who had a mild cognitive disability.  I remember another girl in sixth grade who ended up being rather mean.  For some reason that surprised me, to find that "different" didn't always mean sweet.  For a brief period while our parents spent time together, we had a friend who was deaf.

Although I made efforts to be nice in general, I will admit that disability wasn't always comfortable for me.  Disability really just seemed so distant, in a way.  It was seldom front and center in my life.  It was something that I didn't give much thought to and that I felt impervious to.

Before Cora arrived, I never once believed there could be a possibility of anything being "wrong" or different about her.  Several years before she was born, my husband confided that one of the reasons he was nervous to have children was that he had always had a feeling he would have a child with a disability.  I assured him that there was practically no way that could happen.  Quite funny now, really.

So when I recognized Down syndrome when I first gazed at the face of my newborn daughter, I was completely shocked and surprised.  I felt ill-equipped for a few hours, I am sure.

But within hours, the realization that she was meant to be with me exactly as she is began to permeate.  I began to feel like something that I had always been waiting for had arrived.  And not just the role of motherhood or the birth of my first child.  I began to feel that her "disability" was going to change my life into exactly what it was meant to be.  Maybe that seems a bit "woo woo", but the feeling was powerful and continues to this day.

The fact that Cora has a disability is sometimes evident.  She demonstrates delays and she's learning to do things a few steps behind most of her typically-developing peers.  But she is developing all the same.  She amazes me with what she is learning on a daily basis and with what she shows she understands.  My girl may learn and develop a little bit slower, but she is capable of so much.  She's already changed a number of lives.  As far as I am concerned, the sky is the limit.  And that goes for me too, since I am learning and growing each day along with her.   I am honored to get to witness her life.  She is transforming me into a truer version of myself.

Thank you Meriah for hosting this blog hop!  You can visit her blog, With a Little Moxie to check out other blogs that have linked up and to read more of Meriah's posts and get some glimpses at her adorable kids.

Long Weekend

Long weekends are great, but extra long seems to mean extra exhausting around here.

That could be because Cora's sleeping has been shifting again.  She was wide awake and ready to play much more than she was asleep over the weekend.  Thank goodness for Grammie and Grampie wanting their early morning Cora love, or we would have been walking zombies.

Yes, Cora got some wonderful quality time with her family, and was as happy as could be.  She visited Folklife at the Seattle Center to hear music onstage, watch some mesmerizing street performers, refuse to nap, and be packed in like sardines.  Oh yeah, and she got to watch her favorite fountain yet again, all while rocking the beautiful new hat her Grammie made her.

Checking out a jazz band, in lieu of napping.

She also went on a long stroll by the Green River, spent an evening getting spoiled by the grandfolks and Auntie Mira while we were out at a wedding, and laughed and played. She even permitted a little bit of crawl play, which is apparently way more fun with Auntie and Grammie than it is with Mum and Dad.

Now we're getting ready for a fun week preparing for the NWDSA Reciprocal Learning Community event, "Joy of Literacy", an informational session for parents of children with Ds, ages 0-5.  This will be our 2nd RLC to attend, and the first one that I am volunteering to help set up.  Cora will be partying in the childcare room while we get new ideas for supporting her literacy.  We are also excited to get to visit with some friends that we've been missing.

Oh, and a fun developmental progress report:  Cora has figured out how to suck the puree from food pouches.  Last week at a playdate we watched her 10 month old friend Gia suck down 3 of them in no time flat with barely a spot escaping her mouth.  Meanwhile I was squirting Cora's pack into her open and waiting mouth, with about half of it getting all over the place.  Gia just made it look so easy.  So I decided to try yet again to teach Cora this fun trick.  Well, she's finally got it figured out and is quite proud of herself.  In fact, today she managed to accomplish another major feat:  she drank a little over 2 oz out of her straw cup (which is the most she has drank out of any kind of cup/bottle since she was 3 months old).  She's been able to suck from a straw for months, but mostly refuses to do it, although she will occasionally deign to take a tiny sip or two.  Today I introduced her to kefir, and after practicing her skills with a food pouch, she was ready to drink from the straw.  I am quite pleased with this new development, since so far Cora gets all her liquids via breastfeeding.  Even though I don't intend to wean anytime soon, knowing she has another way to drink will definitely open up her horizons, and will possibly even offer me a little more freedom.  But I better not go ahead and plan too far ahead, since in the 16 months she's graced my life so far, I have learned that there is often a difference between what she can and will do.  But I figured it's safe to say that she may have reached a new level.  These skills can be a challenge for children with low tone, but are important to help achieve necessary skills on the way to speech.  So this development is a definite win-win.

Well, I am off to be productive, while my girlie naps.  It took almost an hour and two parents to get her to sleep for this one.  I'm thinking there may be a shift to 1 nap per day in her future....

Teething Beauty and the Rice

 Lacking in energy and motivation today, I had about 30 minutes before nap time.  And nothing sounded fun.  I was about to turn on Baby Signing Time when I thought of the rice and lentils. 

I bought some in bulk a few weeks ago and put them in little plastic shoeboxes with lids.  The one time I took them out for Cora on a rainy day, I opened them up in the living room and let her go.  At the time, all she wanted to do was shake fistfuls all over the room.  While I did  expect some mess, I wasn't quite ready for that.  So away they went.

But then today, I decided to pull out the bus tub we use for her baths and fill it up with a mix.  Out on the shady deck we went.

No surprise:  Cora had a blast.

Kicking her feet, grabbing handfuls and tossing them over the side, stirring with her "tools", oh, and of course, chewing on things in between. 

Although she surprised me by only managing to stuff a couple grains of rice into her mouth.  No sneaky handfuls this time.

By the end of her play session, she was in no mood to nap.  So after a frustrating long attempt at putting her down, I ended up putting her in front of Baby Signing Time after all.

We are leaving shortly to head out of town tonight, up to see my parents, go to a wedding of some dear old friends of Nick, and introduce Cora to some of her Daddy's best friends for the first time.

It should be a busy and fun weekend.  I'll ask Nick to remind me to take pictures.

Happy Weekend to you all!

Sounds Like Life

These days my schedule seems to fill like a series of lists, with the items being tacked on way faster than they're getting crossed off..  Sounds like life, doesn't it?

In the midst of all this I have barely been reading blogs and getting online, let alone finding time to think about posts, or actually start and finish a post.  Perhaps I am not lacking time in the literal sense. I have the time to get my work done, to schedule an occasional play date, to get the grocery shopping done, make dinner and play with my girl.  But it's the extra stuff that I seem to be missing.  That time where I am free to explore thoughts in my mind, rather than plot out the next several hours of my life while checking items off my list.

Over the weekend we went and saw the Signing Time Live show here in Portland, complete with Rachel Coleman and Hopkins.  Cora was impressed with the show for about 15 minutes, even though it came with technical difficulties that caused a long delay, and really poor sound system.  But she had a few joyful moments, we learned some new signs, and we got to spent a very brief time with some of our friends, Paul, Anthony and Susan.  So all in all, not great, but still a thumbs up.

Not the greatest picture, but the camera battery died shortly thereafter... of course.

Then on Sunday I helped out at a fundraiser for the Northwest Down Syndrome Association, to raise money to put on their next parent seminar event.  Fun, but chaotic and busy.  Cora decided to nap just before leaving, so she didn't even make it out.  But it was a successful day thanks to the hard work of a handful of amazing parents, Susan and Paul at the top of the list.

This week feels pretty busy too.  We had a fun play-date today after the morning therapy session.  Cora had a blast sitting on the floor of an expansive play area, content to sit in my lap, laugh, clap and smile while the other kiddos explored their surroundings.

Then this afternoon Cora decided to impress me by signing "sleep" while watching Signing Time.  She was quite the little signer, complete with theatrical squinty tired little eyes and the proper hand motion.  Oh my word, it just about melted me.  I saw her doing the motion and ran over to see what was on the screen.  Sure enough... "sleep."  Last week I caught her trying to sign "moon" while watching.  That one's a little harder.  But still, she's definitely starting to show us what she's seeing.  She's been demonstrating her recognition of more and more things in books and pictures lately, accurately pointing out almost every animal I ask her about, in addition to pointing out colors consistently, and even all kinds of other familiar objects.  She truly is absorbing so much, which is exciting to see.

There really is so much going on, things that are worth several good blog posts.  If I actually took out the camera these days I'm sure I could come up with even more.  But for now, that's all I have.  I'm going to turn off the computer now and allow myself a few quiet moments before I head in for another interrupted night of sleep.  I'm going to try and absorb some sad news that I learned tonight and be thankful for all the important people in my life.


And that's all I've got.  But I will make a concerted effort to at least take some pictures of Cora in the next few days.  Maybe I'll even post them.

Bored

Cora and I are bored at home this week.  She's still under the weather, with an odd mix of symptoms, none of them too serious.  But she's certainly not her typically happy self.

So to carry myself over (and maybe to carry you over, as well), here are a few happy shots from a few days ago.

Love this girl!

Mother's Day at the Beach

Last year on Mother's Day, Cora had had heart surgery about a month prior.  We were still keeping her somewhat quarantined at the time, she was still fussy and erratic, and we were still reeling a bit from all the major events of the prior few months.

But this year the sun was shining bright and life felt good and easy, so we decided to drive to the beach on Saturday to celebrate.  Somehow it had been 2 years since we'd been to the open ocean.  How did that happen, since it's only about an hour and a half away?  The last time we went to the coast was actually when I was newly pregnant with Cora, yet still didn't know it.  In fact, I had taken a negative pregnancy test that very morning, just minutes after my sister announced her own pregnancy.   Little did we know, as we traced the name of the baby girl we envisioned in the sand that weekend, that she was already on her way into our lives.

On Saturday we drove to one of the close, less remote beaches, content to trade extra time in the car for time on the sand creating our own little haven.  Lots of sunscreen, our beach umbrella and a picnic transformed our day as we watched our little girlie experience the beach for the first time.



Sand, of course, was a huge hit and ended up everywhere.  She managed a few sneak handfuls into the mouth, looking at us with mild surprise as she tasted the grains and smiled with her new sand goatee.





Skipping along the water's edge, she crowed with laughter, and tentatively dipped her toes into the cold water.



Several hours later, we went into town to have dinner, and decided to see if we could get a room for the night.  Pretty much lacking all the "essentials", we hunkered down in our room with a view over the water and watched the sun set over the Pacific.

Pretty amazing, really.  Its felt like so long since we've really taken even a day to get out of our routines and relax.  We do take trips to visit family, but with travel and visiting, it's not about pure relaxation.  So it felt wonderful to feel our anxieties melt away and watch our girl enjoy her mini vacation.

On Sunday, we walked, had a lovely breakfast, enjoyed our morning and then headed back home.  Just a few minutes from home, Cora started vomiting all over herself in the backseat, and spent the rest of the day fussing and crying and fighting a low fever.  And although I felt badly for my girlie, spending the rest of the day cuddling and soothing and nursing actually felt like a pretty realistic Mother's Day to me.  Sure, it's nice to be wined and dined and treated like a queen, but it's really all about caring for your little one.

And today, my little one is under the weather again.  I'm hoping that it can be explained by her drawn out teething episode, but it looks like it may be a bug of some kind.  I'll be in full mothering mode again, taking a break from our regularly scheduled program.

But even ending as it did, what a lovely weekend.  Happy Mother's Day to all the mamas out there.
 

Mother

If I had to pick one person to spend all my days with for the rest of my life, my mother would probably be leading in the running.

Although I don't have many specific memories of being little and needing her, my mama has always been there, always ready to provide just what I needed.

When I was in my early twenties spending a winter in Montreal, I called her (petrified of the cold after a disastrous trip ice-caving a couple years before) almost in tears over the impending winter as cold air already was rising up through my frame-less mattress in my poorly insulated ground-floor apartment. Within a few days, a box with a down mattress cover, down comforter, flannel sheets and heated mattress pad arrived in the mail.  I spent the rest of that winter tucked into bed, too poor to raise the thermostat.  When I arrived home the next year, heartbroken and alone, my mama was there.

When I was terrified as my own sweet girl was in the hospital and having heart surgery, my mama was there.

She really is always there for me.  For everyone in her life, really.  The number of people who have found temporary (some less temporary) refuge under her roof and in her life is remarkable.

Even now, when I am sick, or sad, or need someone to talk to, it's almost always her number that I call, her couch that I want to lounge on.  Though sometimes she hovers in the background, at others she is the boisterous life of the party, usually one of the masterminds behind the family antics, of which there are plenty.  She's not one to talk much about herself but is always listening, always there, always supporting.  Never too quick to give advice, never judgmental, and usually ready with a poignant comment when asked her opinion.  She is truly the woman I aspire to be.

I, on the other hand, am not nearly as easy to be with, nor am I so relaxed and accepting.  Even if I wanted to spend all my days with her, I seriously doubt she'd be able to tolerate that much time with me (even though she may not admit it.)

As I celebrate my second Mother's Day I am overwhelmed by the searing, blistering, almost physically painful love that I have for my daughter, so thankful that her presence in my life has offered me this opportunity to be this most incredible, mysterious, blessed person: a mother.  So far Cora seems to think that I am the greatest.  That, in and of itself, is a lot to live up to, and I'm sure that I am bound to let her down at times, human that I am.  But am I ever lucky that I have had the best role model of all.  My mother.  My friend.

I love you, Mum.

Date Night With The Fam

Today I realized that it is the two-year anniversary of the day Cora came to be.  Not that I'm all about celebrating her conception day as my own deal... that's kind of weird, isn't it? 

But two years ago today, two cells came together to start the process that resulted in my lovely little silly little spectacular extra-chromosomed girl.  Two years that she has been in existence.  It all started the day after Mother's Day... rather serendipitous, if you ask me.

To me that seems like a kind of big deal.  A day to be happy.

We were lucky to have a bright, blue sunny Portland day.  And then for dinner we took ourselves out for a lovely date of great pizza (yes, Cora loved it too), a little beer, and some fun live kid's music.  Then for dessert we went for gourmet ice cream.  Some caramel salted dark chocolate kind of gourmet goodness.  Yes, Cora loved that too.

Now my girlie is tucked up in bed, lightly snoring for hopefully a good number of uninterrupted hours.  I will even keep my fingers crossed that she sleeps in until the late hour of 6:00 a.m.  A girl can dream, can't she?

 

Happy day!

Wordless Wednesday: Picnic

My Independent Girl

It's been an action packed last few days, with a trip up to my parents' house, where we celebrated an early Mother's Day with my mom, celebrated Cinco de Mayo with a great dinner, and celebrated my brother out-law's birthday.  Lots of celebrating.  The weather was beautiful, so we drove out to a beach on the Puget Sound.  Sadly, Cora didn't have a very good day and melted down in Trader Joe's after too many people tried to talk to her.  We'll blame teething on that one.

And no surprise... pretty much no photos.  Yes, I know.  When I am having too much fun I don't take pictures.

Cora has been asserting herself lately.  Her sense of independence is most obvious during mealtime.  She really wants to feed herself with the spoon.  Most of the time she'll let me feed her part of the meal, and then she wants to feed the rest.  She will reach for the spoon with her left hand and then insist on dipping it into the bowl (even though it already has food on it), then goes for her mouth with a little assistance from me.  The next part is what is funny:  she then switches the spoon to her right hand and dips it in the bowl (although often, she just smashes it into the bowl and then throws it on the floor.)

Enjoying her picnic dinner in the back-yard last night. Cayenne does not look impressed.

This morning she wouldn't let me feed her at all.  I am amazed that she tolerated my hand helping the spoon along at all.  It must have been a record number of spoon throws.  But the fact that she was up at 5:30 and was exhausted by 8:00 could have upped the sass factor.

I am excited to see what my little girlie will accomplish and am hoping that her independent streak will start to transfer to a desire to move her little body around this place.  I think she's almost there in the butt-scooting department.  And even though I have long wanted her to crawl and avoid the butt scoot, at this point I am just excited for her to realize she can get around on her own.  Then, boy will I be in trouble!

Wordless Wednesday: Ball