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!"

Gloomy

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.

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.

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.

Life on Hold

I feel like we're just now coming out of our little hovel.

Cora's been home from the hospital for almost a week, but I was hit pretty hard during her 4-day hospital stay.  Today, after 10 days of being sick, I finally ventured out of the house.

So that makes two weeks lost to sickness.  As scary as it is obsessing over your baby's breathing, and as helpless as you feel stuck in the hospital, or sitting at home feeling miserable, there's nothing like coming out the other side.  I admit that I still can't smell anything or walk very fast, and that Cora still has an amoxicillin rash marking up her cute little face.  But we are definitely on our way to well, and happy to be here.

Today we ventured to a park for some happy swing time and went on a glorious walk.  Last night we had dinner with my Dad, who was in town for a seminar. 

Otherwise, life has been on hold.

I am looking forward to the adventure of spring, to warmer days and time spent outside.  To trips to see family and friends, time spent camping, and a summer road trip or two.

And to appreciating many, many more of these smiles.

Pneumonia is not my friend

We're writing from our lovely room at the Children's Hospital where Miss Beanie is duking it out with pneumonia.

Yes, it sucks.  Her first real immune sickness occurred a couple of months ago, so we've had the impression that she has a good little immune system.  But we knew that she would be at increased risk for pneumonia in general since she had a severe bout of aspiration pneumonia last year after her tonsillectomy and adenoidectomy.

We were just hoping to avoid it.

But no dice.

She's been sick since Saturday, but had started to get worse on Wednesday.  Then yesterday she was very weak, pale, listless and sleepy with a fever over 102 and some vomiting. Then I noticed her ribs retracting with each fast shallow breath.

I am definitely a bit of the over-reacting mama bear.  Nick, ever rational, doesn't always immediately jump to the conclusions that I do.  I agreed to wait the hour until he got home before heading out of the house.  But after he got home from work he agreed pretty quickly that we should head to the ER.  I already had our bags ready to go.

Her oxygen saturations were in the low 80s in triage, so some time was spent getting her on oxygen, getting in an IV with fluids and antibiotics and getting a X-ray.  Pneumonia and dehydration is the diagnosis.

Last night held very little sleep for us. Maybe 4 hours for Cora, a bit more for Nick on the cot, and less than an hour for me.  Her O2 levels kept dropping during her sleep, her lungs sounding more crackly, and her breathing getting shallow and labored again. Even though we're just on the pediatric floor, it felt more like ICU care since we had nurses, doctors, and respiratory therapists in the room every few minutes all night long.  No wonder we didn't sleep.  And the rest of the time I was watching the monitors and watching her breathe, ever the worrier.

With a couple nebulizer treatments in the early morning, a CPAP treatment around 8am (which were so miserable for her last year) and continued oxygen and antibiotics, she seems to be improving.  For now we just have to wait and see how she does.  She has to be OK without oxygen and without fluids.  Her breathing is definitely the more serious thing to watch, but keeping her hydrated on her own seems a bit daunting.  We've been in the throes of some epic biting/partial weaning/finally deciding to use a cup once in a while, then refusing most everything while sick.  She's 2, she's stubborn and she's sick.  So we'll just see.

So she's got her to do list with a couple big items on it.   Keeping fingers crossed that she can keep getting better and start drinking enough.  Optimistically we could head home tomorrow but it's all up to Cora.

Come on, girlie!

Thank you for your kind thoughts and prayers.

Exhausted girlie getting a snooze on Daddy's chest. 

Finding Hope

My emotions are running the gamut right now.  There seems to be so much to fear, especially after seeing the horror of the bombing in Boston and the ongoing concern and frustration over the responses (and lack of responses) to Ethan Saylor's death.  Last week many of us bombarded Twitter with #justiceforethan.  I finally signed up for a Twitter last week for the sole purpose of participating in the vigil and and my Twitter account was suspended the next day, presumably for spam.  Sigh.  I'm still waiting for a response to my appeal now.

Cora's recent illness with fever has resulted in even less sleep in our house, which is saying a lot, since we are in a perpetual state of sleep deprivation anyway.

So what is it that is keeping me going?  What is keeping me from feeling like throwing in the towel?

Last weekend Nick and I attended All Born (In), the Northwest Down Syndrome Assocation's yearly conference on cross-disability inclusion.  The prior year I went and tried to focus on details relevant to the toddler/baby years with some sessions on IEPs and rights, etc. And it was all a bit much for me.

This year I went looking for a bigger picture.  And you know what?  I found just what I needed.  I can't even tell you how many times I had to wipe away tears as I heard the testimonies of several incredible speakers.

I listened and learned about how to raise a visionary by keeping your own vision always in sight.  I re-affirmed for myself the importance of presuming competency in our children.  It is so easy to constantly question, so I am glad to have been reminded that perpetually questioning our own children's abilities can be more limiting to them than their disabilities. 

But the most poignant thing I heard, and which rang true in that way that truths so often do, when you realize you've known it all along, is that our hopes must be bigger than our fears.  

Our hopes for our children and our belief in their gifts, strengths, and abilities has to be stronger than the fears that they won't be accepted or that they won't achieve, or that even worse things may happen.  These words were especially difficult for me in light of Ethan Saylor's death.  The fear of my child suffering that kind of abuse has the power to incapacitate me.  And I can't give fear that kind of power.  I can't let it take over me, and I certainly can't let my fear limit my daughter.

Each person has gifts to share with the world, a way to contribute to their communities and their societies.  As parents it is up to us to help our children discover and realize these gifts.  It is up to us to be creative, to be brave, to make ourselves uncomfortable, even, as we help our children be seen, as we help our children form relationships and become contributing members of our society.  The last thing I want for my child is for loneliness to become a hurdle more disabling than any diagnosis could be.  Giving my vision of her life over to my fears could well help those fears to come true.

Yes, horrible things do happen.  It is so hard to erase our fears that our children will be victimized as a result of their disabilities.  But we must try.  We must try to keep our own visions BIG enough to outweigh our fears.

Thank you to All Born (In), to Connie Lyle O'Brien for reminding me of the importance of hope over fear, and to Roberta Dunn for helping me refine my visions, especially when the world looks so dark.