Friday, May 31, 2013


I feel so useless.  Useless and exhausted and sad.

It seems like between me and Cora someone has been sick for most of 2013.

It's funny, since until she turned 2 she seemed to have a great little immune system.  And my own previously poor immune system had been doing pretty well, holding up even in light of the stresses of the past couple of years.  I guess I should have known.  Sometimes my body has a sense that I don't always pick up on, staying strong through the hard stuff only to collapse when it's behind me.

But I guess two plus years of way too little sleep must have caught up with us.

After our shared cold last week I had a couple okay days and overdid it.  Then came a bad cough. Again.

I'm spending my days in my pajamas, doing the bare minimum, feeling guilty for the hours that I leave the television on.  Constantly imploring the universe to keep this crud from Cora's tiny lungs. 

I hate the fear I feel every time I hear congestion in her upper airway, the small panic when I hear her cough, knowing that it doesn't take much to put her back in respiratory distress and back in the hospital.  The hospital is not where we want to be.  Especially after last month's visit ran about $25,000 and our out-of-pocket is high.

I've been beating myself up about my lack of inspired writing, or even inspired living.  Tired of not being inspired.  Tired of not having the energy to do good enough for Cora.  Being in this depressed cycle, feeling sorry for myself even when I know things aren't really that bad sucks.  But how I want to escape from the confines of my tiny house, to go and play in the sun (with plenty of sunscreen and wide-brim hats, of course.)

I'll be keeping my fingers crossed that things start looking up, as I let my girlie entertain me and revel in the amazing things that she does. I'm hoping to get the perspective to allow me to start seeing the good a little more.

A glimpse of the goodness:  Cora having a blast taking pictures, complete with pretend coughs. Yes, pretend play has taken some new forms over here.

Friday, May 24, 2013

My Kind of Entertainment

Hanging out at home all day is hard for me.  It's hard for me to have the patience to keep Cora entertained all day.  That's why I love outings. Cora gets to explore something different and exciting and I get to break up our days.

Days spent at home sick always feel soooo long.

But today I have been giggling at my girl's antics repeatedly.  It's like she's accomplishing all these new little milestones and doing it with a serious case of attitude and a runny nose.

Some of the things that have had me laughing or excited in the past day or so include:

  • Using signs in new combinations more and more.  Today she knocked on the bedroom door (While Nick was talking on the phone in his home office), and signed "Hear Daddy." 
  • Crawling underneath and then getting stuck under a barstool.
  • Learning to cruise between the couches and letting go with one hand to reach.  She needed a little coaxing, but soon was doing it with no help.
  • Getting up onto the couch by herself for the first time to climb into my lap.
  • Learning how to escape from the belt of her high chair.  This mama had to be clever to come up with a new restraint ASAP.
  • Refusing to walk with her push cart or any of her other push toys.
  • Saying "again" and "push" for the first time.  These words, like most of her spoken words, still count as approximations. Her enunciation needs a little work.  But they are her attempts at words, all the same.
  • Throwing fake crying tantrums when she doesn't get what she wants.  (OK, so not super excited about this, but I have to admit that it's been comical at times.)
  • And the funniest:  Saying "mum" for "no."  She has said "dada" for ages. She would occasionally say "mama" but only under dire circumstances, like when I wasn't immediately accessible.  But in the past month or two she's been calling me "mama" with much more regularity.  To show "no", usually she has shaken her head in silence, waving her arm in front of her, and occasionally signing "no."  But now she does all the aforementioned movements while saying "Mum. Mum." with a serious expression.  I find it rather hilarious and a tiny bit insulting.  Especially since, in typical two-year-old fashion, absolutely everything is "no" right now.  But hey.  I'll take it. 

So that's how we're keeping ourselves entertained right now, stuck at home with the sniffles, hoping things look up in time for the weekend. 

"Yeah, I'm talking to YOU!"

Thursday, May 23, 2013


The rain has hit again after being teased by a couple weeks of blue skies and trips to the park.  Escaping the winters when Cora refuses to go outside and escaping the house after being sick for what felt like so long was bliss.

But with the return of the rain has come the return of the crud.  I don't know what is going on with us this year.  A month ago Cora was just out of the hospital and still recovering from pneumonia when I was hit hard.  Since her recovery she is on her 2nd cold... in less than a month.  The girl that I once thought had a great immune system is taking some big hits this spring.

At least these colds have been fairly mild, but they've still kept us cooped in at home.  And I am once again sick, for the second time in less than a month.

So my desire to write, to express, to do anything with much joie de vivre has been suffering.  I want to have things to say.  I want to spend time with friends. I want to have energy and to get out there and have some fun.

But we are once again sitting in our little house with the heat on, watching the rain hit the windows, thinking of all the fun things we could go do if only we weren't contagious.

To lift my spirits a little, perhaps I need  a glimpse of my girly on the beach again, lips ringed in sand and Veggie Stix...

Ah, there... that is helping.  A little.

Sunday, May 12, 2013

The Missing Pieces

This Mother's Day weekend our little trio took a whirlwind trip to the beautiful Oregon Coast.  There's just something about the ocean. Something cleansing, something that somehow sweeps the cobwebs from my heart and inspires me.

We played on the beach, watched Cora point out the birds and dogs, roll around in (and periodically taste) the sand, and then grab our hands and "run" straight for the water again and again.  We laughed and played and had a great time.

This morning I took a solo walk on the beach, the air crisp and the wind blowing, the clouds filling the sky in a way that felt just like home.

Alone is not something I get to do much of, and it's something that feeds me.  It's something I have always needed, and something that I was afraid would change too much after I became a mother.   I walked the sand toward the craggy rocks, breathing the cool salt air, setting goals to work more "me" time into my life, and thinking of how much becoming a mother has transformed me.

A few weeks ago while watching a drama on TV, a scene where a mother's adult son passed away had me in almost a panic.  I could feel her anguish.  I could see Cora on that table, and the pain was unbearable. In that moment, for just a few seconds, I thought that if I could do it all over again there was no way I could handle it.  I felt that being a mother opened up way too much possibility for anguish; that the mere idea of losing Cora hurt so much that never becoming a mother sounded like a better alternative to that possibility.

According to my husband, Don Juan, sorceror and mentor to Carlos Castenada told of "seeing" peoples' souls.  He talked of being able to immediately identify parents, because they were inevitably missing parts of their selves; holes in their centers that their children had removed.

And it rings so true.  Apart from how much motherhood has redefined my days and my values and my perspectives, it is truly like Cora has taken a piece of my soul, one that I couldn't get back if I tried.  Losing a part of oneself like that is terrifying, yet is still the most exquisitely beautiful thing I have ever done. And so it is for us, as mothers. We live our lives, so changed... tethered to the souls that are parts of us, that have taken pieces of our selves, whether these lives are with us or not.

It's with those thoughts that I snuggled Cora in my arms tonight, and read her book after book after book.  Sometimes the days are hard, the struggles frustrating, the experience lonely.  But oh how I love this little child who has stolen my heart.

Wednesday, May 8, 2013

How family helps me out of my Wednesday funk.

Every once in a while I think about how Down syndrome has changed my life.  It seems like it's changed it so dramatically, but I think that really it's motherhood that has done that.

I think about Down syndrome a lot.  I hear some of my friends with kids with Cora's age talk about how they don't really think about it much anymore, that they just see their child, rather than Ds.  And then I wonder why I think of it so much. There really isn't a day that goes by that I don't think about it a little, I am sure.

Whether I'm in a bad mood and find myself watching the passing teenagers faces for some type of reaction as Cora waves at them from her stroller, or whether I follow her closely as she butt-scoots around the playground, never letting go of her hand as she goes down the slide, as the other kids her age run circles around everyone.  It seems like Ds creeps into the back of my mind often, still. 

Much of the time my thoughts aren't negative, but they're still there.  I love my Down syndrome community, both her in real life and online, but sometimes it can be overwhelming always reading about milestones, frustrations and joys.  Sometimes I just need to take a step back.

Hmmm... perhaps I'm feeling a little melancholy today.  I don't know why.  Although breakfast has been ready for some time, I am letting my little strong-willed and loud-voiced girlie watch Yo Gabba Gabba for a few minutes before I brave mealtime, once again.  Sometimes I feel like just handing her the Veggie Stix and being done with it.

Sometimes it's OK to be in a mood. 

But then I go looking through the photos from last weekend spent with Nick's family in Spokane for my sister-in-law's baby shower.  What a lovely time.  And what lovely people that love Cora so much.  It's nice to be around people who can love Cora so purely and easily and don't share my constant concerns and questions.  She sure is loveable.  Even with her sass. 

So here's a glimpse for the rest of you, of my beautiful girl loving her weekend away.  Loving her family.

In case you wondered where Cora gets her whiter than white skin.

On her feet.  Even though she can stand alone a little, she still thinks she needs total support.

Loves.  Can't wait to meet Cora's sweet little cousin in a couple short months.

Three generations.  Lucky girlie!

Signing "cheese."  Because isn't that the correct thing to do when someone takes your picture?

Being outside with Daddy is the best. What a smile!

This girl loves her Grandma Pam!  The feeling is mutual!

Kisses from Grandpa.

The closest to a decent picture with nobody closing their eyes.