It's Flying By

Marking the passage of time as we put up the new calendar feels bittersweet this year.  Before Cora, it signified only more candles on my own cake.

But now that I am watching Cora grow too, the moments seem more important, the small milestones more momentous. 

In just two weeks we'll be putting another year of her life behind us as well, as she will officially become two years old.  And even though she is still a baby in some ways, the little girl in her is emerging more and more each day. 

So much of the time her development seems to happen in slow motion, as she learns to accomplish things in gradual layers, rather than at the warp speed that comes naturally to so many other children.  But I look at her now and see how much she is accomplishing, and how impossible it is to take it for granted.  I look at photos of her even months ago and see how changed she is. 



And of course, so much of me wants to preserve her as she is, to stop time from passing and revel in holding my baby tightly.  The rest of me can't wait for her to reveal more of herself to me as she grows and changes.

Yes, bittersweet.

This was a lovely year.  A year of some stresses, to be sure, but of many firsts and many wonderful moments with our little family and the rest of our family and friends.

I'm looking forward to another year of firsts; to watch Cora grow into toddlerhood.  The list of things she needs to learn seems daunting, yet I know in my heart that she will get there and that where she is right now is just fine.

Silly goose!

How New Front Teeth Almost Killed Christmas

Cora gave me a lovely gift yesterday on Christmas Eve.

She ended her 4-day nursing strike.  It all started with biting.  She may not have many teeth, but the ones she has are SHARP!  Apparently she was traumatized by my saying "ouch" and putting her down, because after a couple of days of frequent bites (and yes, she is working on some apparently huge new front teeth right now), she began to refuse to nurse.  She'd ask to nurse, then whine and twist away with every attempt.

I know that she is almost 2 and that for most toddlers, weaning at this age would be a viable option.  But this girlie isn't big on drinking from cups or bottles.  We have a shelf full of them, and when she is feeling very interested she may drink an ounce or so.  That's it.  Over the past few days, we surrounded her with cups and choices of beverage and I went out and bought a useless manual pump.  I scoured Kellymom and Babycenter for advice. We were trying everything.

After the first day of her strike, she was dehydrated and we were scrambling to get fluids in her.  After a ton of effort, the only solution seemed to be smoothies given by syringe.

I started out the holidays stressed out, worrying about her intake, my milk supply and whether she would get past this.  It brought me right back to her first few months of round-the-clock feedings, NG tubes and a baby who just didn't want to eat.  Stress and tears and worries.  Days I really don't want to re-live any time soon.

So on the night before Christmas Eve, when she began nursing at night (usually not on the menu) without biting, and then snuggling in to nurse even when awake, I sighed with the biggest relief.  And elation. 



After an evening of food and merriment, this morning we got down to the business of celebrating Christmas, sitting in our jammies, sipping coffee and mimosas, eating sticky buns right from the oven.  Rooty-toot-toots and rummy-tum-tums all the way. 



Stockings and lovely handmade gifts.  Cora and I even got something I've been wanting for the two of us well before I even had Cora:  matching aprons from Auntie Tara.  Beautiful.



May your day be merry and bright.

Wish List

As we have witnessed such heartache and tragedy recently, we've been holding our own babies closer.  As I've held my own Cora tighter, thinking of the families who've lost their babies, I've also been thinking of the children without families; the children who have no one to hold them tightly.

Those of us in the Down syndrome community know about the great efforts of many families to adopt children with Down syndrome from other parts of the world.

We know that in Eastern Europe, children with Down syndrome are routinely given up and placed in orphanages, only to be transferred to adult mental institutions a few years later.  The survival rate for children in these institutions is so small it is staggering.

The idea of our own sweet babies, like Cora, Hailey, and Ellie awaiting this fate simply by being born with an extra chromosome in a different culture seems impossible.   Picturing my own beautiful girl peering out from behind the bars of a crib without a family to love her breaks my heart.

Many of us have been supporting the adoptions of these children through donations, though pursuing adoptions, and by advocating for some of the children in need of families.

Here in Portland, I've been getting involved with local Down syndrome community, and that is where I met the Nine family.  The Nines have seven children, one of whom rocks an extra chromosome and hails from Russia.  Sweet Vahnya was adopted in 2011 and is such an incredible part of their family.

Now the Nines are in the process of pursuing their second adoption and plan to bring home Sebastian some time next year.

Sebastian is 2 years old and weighs only 12 pounds.  He can not sit up by himself.  He takes his only food through a bottle.  

It is known that the orphanage where little Sebastian lives does not have great conditions, and many people are working to change that.  In the meantime, this sweet boy has no family with him to protect him or to love him.  His life literally depends on becoming a part of this amazing family that are so ready to welcome him home.

There are so many worthy causes.  So many groups and individuals truly deserving of your hard earned donations.  But your donations can truly help save a child like Sebastian's life.  His actual, literal life.  How often is that extra dollar you drop in a bucket or few dollars you spend on coffee actually working to save someone's life?  How often can checking off one item on your Christmas wish list make such a different in someone's life?

This holiday season, if you're looking for a meaningful gift, consider donating in your loved ones' name to Sebastian's adoption, or to another deserving child on Reece's Rainbow.  Donations through Reece's Rainbow are tax deductible, and are a great idea for a stocking stuffer.

Every dollar helps.  Please consider donating today.

Donate to Sebastian's adoption fund through the Reece's Rainbow adoption ministry or visit the the Nine's adoption blog to read more about their journey and donate to their Chip-in to help cover costs that the Reece's Rainbow funds cannot cover.

Consider it your gift to Cora.

April 15, 2013 Update:  The Nine family has plans to make their first trip abroad in their adoption process, where they will get to meet Sebastian.  They are close to meeting their fundraising goal for the first trip; but this is only the beginning.  I know that they can raise the money to save this child's life.  Please share, if you can, or donate, if you're able.

Sorrow and Joy

The last week has been a hodgepodge of hustle and bustle, activities and events, sadness and tears.

On Tuesday there was a shooting at our local mall, where I had taken Cora just a couple of days earlier.  That evening I went to the playgroup that I co-host for our local Down syndrome Association with goodies to find that no one else had made it out. 

And then, of course, later this week we were all stunned by the senseless and tragic shooting in Connecticut.  I don't have any profound insights to offer, but it's clear that this holiday season has been tainted by these sorrowful events.  Our festivities seem dampened, even as the moments seem sharper and our children more precious.  

But the last week has contained some joy, as well.

We've had Christmas parties and play-dates.

And December in our house means birthdays too.  Yesterday I celebrated my 35th birthday.  It was a lovely day, starting with breakfast with three of my best girl friends (yes, without husband and child!), a lazy afternoon with my family, and a dinner so great that even Cora spent the evening eating everything in sight.

Now we are prepping to travel in a few days to see Nick's family in Spokane for Christmas, happy to let Cora spend a few good days with her Daddy's side of the family.

We've been dancing to Christmas music, watching Cora sign "tree" a lot, and watching Cora rip up tissue paper as she preps for her starring role on Christmas morning.

And our little miss has been impressing us with her gradually improving gross motor skills.  No, she's not taking off walking yet, but ever since she got her Sure Steps foot and ankle braces a couple of months ago, her stability and confidence has improved dramatically.  She is so much more steady on her feet, and when the mood strikes has been pulling up to stand on her own a lot more.  She will use her heavily weighted push toy with some spotting, and loves to walk across the floor if her hands are held.  Especially if we sing along... "We are the dinosaurs.... marching... marching!"  Music is a great motivator for Little Beanie.

A couple more glimpses of my pretty little sassy girl, just for fun.

 

Wishing you all a beautiful holiday season.

Just Call Me Trouble

Who, me?

Today we realized that we are a tad behind on child-proofing.

I've been half-heartedly telling Nick that we really need to do the final work on the bedroom.  But so far Cora hasn't done much climbing out of bed, even though we knew it was ready to happen.  (For the record, no, she's not climbing out of a crib. She sleeps on a toddler mattress right next to our mattress, both on the floor.  It's part of our GRADUAL attempt to work her out of our bed.)

Usually she lets us know she's awake by talking or whining, and then she sits and plays until we come to her.

But last week Nick heard some noise in the room and went in to find Cora scooting toward the dresser, leaving a trail from her dirty, leaky diaper.  Again on Saturday when I went to get her up I found her scooting to the trash can.  We should have finished the child-proofing then.

But yesterday she gave not a peep.  Not even one.  The little sneaker has learned the ropes.

I heard a small bump.  The kind of bump that is typical in a house with two cats.  But still, I knew that I should go check on Cora.

This time I found her on the floor on Daddy's side of the bed.  The as yet not child-proofed side, complete with uncovered electrical outlets (yes, I know... negligent...) and even a couple pairs of Daddy's shoes, whose soles Cora will disgustingly lick if lucky enough to find a wayward pair.

But her true find was the box of tissues.



Yes, I know, not overwhelmingly naughty.  And when caught in the act she was quite pleased herself.

She was even willing to share the loot.

But it did prompt us to immediately finish our baby-proofing efforts.  We finally installed the outlet covers and tucked the wires safely away.  Oh yeah, and moved the kleenex out of reach.  Guess now we just need a more sensitive baby monitor or one with a video.

Marching, Marching!

We are big Signing Time fans over here.  Cora usually lets me know that she wants to watch it by pointing to her wrist and signing "time."  How can you resist that?

I mean, it's completely educational, and a mama has to be able to get some things done sometimes.

But lately, the Laurie Berkner Band has been giving Signing Time a run for its money.  I let Cora watch their Netflix video pretty often, since the music and the repetition is good for helping to learn speech.  She even sings along to a couple of songs.  Her speech therapist would be proud.

And since music is a great motivator for her, we practice walking while singing "We are the dinosaurs, marching, marching!"

In the last couple of days she has started asking to watch it.  She will sit on the floor and stomp her feet, pointing at the TV and smiling.

This girl may not verbalize a whole lot, but she sure knows how to communicate.

And seeing her smile as she watches the music: signing along, interjecting her little head bopping dancing when the mood strikes... priceless.

No More Sugarplums

You know that stereotype about people with Down syndrome being "always happy?"

So many of my fellow Ds moms hate that stereotype and are happy to break it down with photos of their kids melting down, crying and being little rascals.

But you know what?  I kind of wish it were true sometimes.

I understand that ascribing only one emotion or state of mind to a person can be a little de-humanizing.  I want the world to see my daughter as she is, a complex individual with her own wants and needs.

But these days a little more happy wouldn't hurt.

Let's just say that the terrible twos are in full force, even though her official birthday is a little over a month away.  The days of my mostly snuggly, smiley little girl seem to be fading into the background, replaced by an arching, flailing, griping girl, eager to avoid diaper changes, clothing changes, being fed, being put in the car. You know the drill.  She's a toddler.

I get it.  The desire to be independent is strong.  But because a certain someone's fine motor skills aren't quite up to the task of self-feeding the very few healthy foods that she can/will eat, this mama is getting frustrated. I know that kids won't starve themselves, and Cora would happily rely on nursing to fill all the gaps.  But I am growing weary of constantly nursing.

So now I am looking for ideas to help self-feed soup and yogurt.  And ideas to help a big toddler girl accept transitions.  Explaining things and signing in advance helps.

But, aye.  I'm feeling a bit exasperated.

Take last night's adventure to ZooLights at the Oregon Zoo.  I have been looking forward to taking Cora for months.  So, of course, she decided to cry almost the whole time. 

Still trying to make the most of the night...

Sharing her true feelings. Blurry, yes, but this totally captures Cora's night at the zoo.

It's time to re-set my expectations and accept that my visions of sugarplums may have to remain visions for a couple more years. You know, it's supposed to be sugarplums dancing in the children's heads.  I'm pretty sure Cora would spit out sugarplums if she had the chance.

Maybe I have to accept that feeding and clothing may be a bit of a vision too and start adjusting to my life with my toddler.

Good thing she's stinking cute.

Food is Fun

In my pre-parenting days of food obsession I used to worry about whether I'd end up with picky eaters in my family. 

Turns out, I've learned that there are many other things to worry about as a parent, and Cora's picky eating doesn't top the list.

Things seemed to go well when we introduced Cora to solids, but with severe food intolerances, significantly delayed teething, and possibly some sensory issues, eating isn't always the smoothest thing for her.

There are a couple of things that Cora will usually eat, but you can never be sure. Something that has her yelling with glee one day often hits the floor the next.  Homemade soup is a big hit, and the only way I can mix textures in a way that my girl finds acceptable. If it's all cooked together the texture must be similar enough to keep it in her mouth. And soups are a great way to get in the veggies. 

We still make it a priority to enjoy our meals together as a family every day.  It's messy and sometimes it feels like work to plan, shop, cook and clean.

But it's still fun.

Torture Disguised as Fun

As a child, my family never got our Christmas tree early.  Nope, we waited until on or after December 15th, my birthday.  I insisted upon it.  No Christmas festivities until my birthday got proper celebration.

I also had a lot of very disappointing birthdays, since the sheer anticipation made for a day that could never quite live up to my expectations.  I've tried to change, really I have, but that part of my personality still comes through sometimes.

Since Nick and I have been together, we choose to get our tree right after Thanksgiving.  We want to have it for as long as possible, especially since we never spend Christmas at home.

Last year we started our first Christmas traditions with Cora.  And instead of going to a nursery lot in town, we went out to a tree farm for our own little tree.  It was a blast.  Beautiful blue skies (not sometimes to take for granted this time of year around here), lovely trees, and a great family tradition was born.

Sunday, after coming back in town after thoroughly celebrating Thanksgiving, we bundled up and headed out to the same farm, happy that the sky was shining bright and we were going to have the kind of fun we had last year.

Cue the sad girl.  Of course.  The second we plopped her in the baby backpack she started to whine.  Soon we came back for the cuddly front pack that she loves.  Still more tears.

We spent most of the time cuddling her, singing to her and trying to make her laugh.  Successfully, for short periods.









Our trip was abridged.  No time for making ornaments or enjoying the hot chocolate or apple cider (which Cora spit out like it was poison, anyway).

But we still managed to find the perfect little tree: a small 6 foot noble to hide in the corner between the couches where Cora can't get to it, perched on a little table. 

So much for expectations....  We'll see how the rest of our festivities go.  Since we've got a few more days before December even arrives we have time for plenty more merriment.  Or tears.  Most likely a little of both.
 

 

The closest thing to a family Christmas photo. Tortured baby style. And the only pic that shows Cora's true feelings.

Thankful

Thankful.

For free-range organic turkeys, brined and roasted just so.  For smoked turkey breast, for broccoli with cheese sauce and for yam pomegranate salad.  For homemade pies.  For incredible food made with love.

For good times with family and friends. 

For a surprisingly mobile little toddler, scooting around the house, climbing up stairs and getting into things her grandparents hadn't thought to baby-proof yet.



For the Pacific Science Center and the butterfly house.  For the toddler play area and water table that a certain girlie is finally strong enough to stand and play with.



For a sassy little, sweet little, sometimes grumpy little girl, pigtails a-kilter.





For a warm, comfortable home, for people that we love around us, for all the joys in our lives.

Hello.

I guess 31 days of straight posting left me needing some breathing room, since it's been two weeks since my last post.  Probably the longest break in quite some time.

The space has been filled with rain, not nearly enough sleep, a gazillion appointments for both Cora and for me, and a couple of writing projects for our local Down syndrome association; one for a booklet on heart surgery, the other a speech for an event this weekend.

Right now I am waiting for Nick to bring Cora back for her pre-bed nursing session.  I love that time, but I am so coveting a little time alone on the couch right now.

Trying to find space around here has become an oxymoron.  

Of course, one of the cats is crawling around on my lap, desperately seeking some love.  And I feel horribly guilty every time I keep pushing her off.  She needs Mommy too, right?

But sometimes Mommy needs to be Leah.  Sigh.  Without a child/two cats/a husband pulling at my ankles.  I don't get to be just Leah very often these days.

But I've taken a step.  Yes, I've put out an ad for a babysitter a couple hours a week.  Not much, I know.  But it's a start for my terribly attached almost-two-year-old girl, and probably more of a step for me.  Dependency must run both ways.

I've had a few posts running through my head for the past two weeks, with imaginary photographs I haven't taken to accompany them (yes, it's hard these days when Cora seems to hide from the camera or frown at me when I point it at her).  I'm sure I'll get around to updating you all soon enough.

But even without a great deal of substance to say, I needed to come back.  Just a little.  But that's okay, I've decided.

So, for those that need their own Little Beanie fix, since I sometimes forget that you don't all get your own little Beanie girl every minute of every day and night. (Yes... almost every minute of every night.  That may be a slight exaggeration, but I swear, this girl does not sleep all that much.)  Here is a little sample. 

Cora the artist.

What brush strokes!

Working so hard to swish that brush around in the water.... 

"Look what I did, Mama!"

So proud!

If I Had Known -31 for 21

If I knew then what I know now, what would I do differently?  If I could talk to myself in those early days after Cora's birth with the perspective I have now, what would I say?

I've been asking myself this question over the past couple of weeks, not sure how to answer.

Would I give myself words of wisdom, telling myself that it would all be fine?

Would I try to take away my initial thoughts and feelings and experience only the joyous moments?

I've realized that if I had known what I know now, there's not much I would change.  It's clear that I still have some feelings to work through.  As I've been writing every day this month, my thoughts surrounding Cora's birth and the months leading up to surgery keep bubbling to the surface, some of them painful still. 

But I am also learning that even though taking away my initial sadness, disappointment, frustration or fears may make me feel less guilty, or may make me feel like a stronger person or a better mother, I really couldn't and shouldn't take those feelings away.  They were things I had to live.  They were things I had to learn.  And they are part of me.
  
What I wish I had known was that all of my feelings were okay.  

I wish I had known that I didn't have to act like I was so strong and confident all the time.  That it was okay to be weak, okay to cry.  That it was okay to be afraid as I watched my baby deteriorate before my eyes.  That it was okay to love my daughter so completely and at the same time feel conflicted and so inadequate.

I also wish I had known that it was okay to rely on my instinct as a mother.   I wish I had known that Cora having Down syndrome, a heart defect and a hospital stay shouldn't have diminished that.

I would tell the nurses that I would not put her in the isolette to "sleep and grow".  I'd tell them I was going to hold her while she slept, and that she could grow feeling safe and warm in her mother's arms.  I would advocate more for myself as a mother, not only for answers to my medical questions and to get her the care she needed.

Photo by Shon Taylor

I would tell myself that strength would come.  That even though I didn't feel like the infinitely strong person that my friends somehow saw, that Cora would bring me strength.  That loving her was already bringing me more strength than I could imagine.  That my role as her mother is what I am meant to be: strong and weak, joyous and sad, confident and afraid.

And that all of it is okay.

Photo by Shon Taylor