The Good and Beautiful

I feel like writing about how ridiculously hard this long-term, reduces me-to-the-rawest-of-nerves sleep deprivation is going.  But just thinking about summoning those words makes me want to cry.

I often have the desire to write.  But in between the endless days with the kids, my barely-getting-it-done work, and my desperate and usually failed attempts to get rest, writing gets shuffled to the bottom of priorities.

There are many good and beautiful things going on, even as I fight the brain fog that seems to be winning.

These two are my good and my beautiful.

Every time I feel the desire to write about my girls, I start looking at their photos, and my words seem to escape me. 

I just can't seem to get past how much their growing love and friendship gets to me.  It's like magic.  It's healing.  It definitely makes me forget how many times I'm up at night... at least for a few minutes.  You know, until the next power struggle, tantrum, or screeching baby breaks the spell.

It's so beautiful to watch unfold.  What gets me more than anything is how much Ruby loves her sister.  How hard she will laugh at Cora's antics.  Gut-splitting, breath-stopping laughter. 
 

I see their love for one another and I can't believe I ever doubted the decision to add to our family.  So many of my worries seem so silly now.  I worried about how Cora would feel about her sister, about how my relationship with her would change.  I didn't spend nearly as much time thinking about how it would be for Ruby to enter this family.

Turns out Ruby thinks it's a hoot.  And I'm so glad.

I know that their relationship will grow and change as they grow and change.  Already, I'm feeling dizzy from how fast things are going.  This baby will be running circles around me very, very soon.  This big girl is almost done with her first year of preschool and is astounding me all the time.

This life is full of beauty and joy and love.

But damn it, I'd enjoy it so much more with a little bit of sleep.

Happy Heart Day

To the beautiful, silly, hilarious one who stole my heart just over four years ago.

On this day, four years after the open heart surgery that saved your precious life, I am oh so grateful.  Grateful that the surgery gave me you.  I can't even imagine life without you, and I never want to have to try.

Happy 4th Heart Day, sweet Cora.

Easter Eggs

 

 

Date Day

Dates have taken on new meaning around here, after having kids.

In the last few years before becoming parents, most of our dates involved good food and maybe an adult beverage or two.  The rare late night out would involved friends and maybe some music or sitting around a backyard fire.  After kids, dates for the two of us are very few and far between. 

The last real date Nick and I shared was almost exactly a year ago, when I was about 6 months pregnant with Ruby.  We spent the night in Seattle while Cora had a slumber party with her Grammie.  The big night out consisted of a lovely dinner out and an extremely early bedtime for us.  A full night of uninterrupted sleep after good food was as much excitement as we could hope for, especially with chronic sleep deprivation and a very uncomfortable pregnancy.

But today Cora got to have a date with her Daddy, leaving me and Ruby at home to spend some quiet time together.  Usually during the rare times that they share time alone, they'll go on a bike ride to the park, or some other place that we visit often. Today they went for a new adventure together, and rode the train along the waterfront.

Cora was pretty excited.

Yes, all the photos are from phones.

On the train!

One of the many bridges

She was apparently very well behaved.  It must have been the novelty, since Nick did not have to carry her over his shoulder at any point.  I'll consider that a win.

And in the meantime, I got to have some mellow time with this little sweetie.  We got to hang out and trade smiles while she sat in the swing.

She got to dive into the sandbox and get her first taste of sand.

And I got to sit and watch her without chasing a squealing preschooler down the driveway.  No cajoling or bribing occurred.  No redirection or motivators to scramble for.  I did have to retrieve some sharp sticks, and swipe some leaves out of her mouth after she started gagging, but all in all it was calm and relaxed.

It was nice to have some one-on-one time with my little one, if only for a couple of hours.

But it was also pretty nice to welcome back my big girl and hear her excited answers to my questions about the train.  It was nice to feel refreshed, even if it wasn't quite a break.

As nice as it is to have time together with the four of us, it was exciting to mix it up and have some special date time with our girls.  We'll have to make it a habit more often.

World Down Syndrome Day

Pesky Little Sister

 

Things that Keep me Up at Night

There are always a number of things that we're focusing on teaching to Cora.  Whether we're practicing new motor skill like walking up a step without holding onto a rail, or speech: practicing stringing words together to form a commonly-used sentence, or repeating her name in a little song, listening as her "Ca-ga" gradually turns into "Cooo-wa".

There are always quite a few somethings that we rotate through, watching her skills come through sometimes in small explosions, and at other times slowly and gradually and with a lot of practice.

Those of you with children with intellectual disabilities, and Down syndrome in particular know this drill. It's not just a matter of cognitive delays, but of low muscle tone that causes delays and challenges with gross and fine motor activities, and a more challenging time speaking.  A lot of the growth that Cora makes seems to come without intensive "work" at it... the strides seem to happen naturally and in their own time when she is ready to take them.  But at other times, things that seem to emerge for typically-developing children fairly effortlessly and without a lot of specific focused instruction tend to need to be explicitly taught.  I am seeing examples of this on a daily basis, as I witness Cora's baby sister Ruby move through stages with what sometimes feels like magic and remember how much effort Cora put into each new development.

But among all the things that we want to work on and help Cora master, there are always a few that stick out as urgent, critical and sometimes scary.  For me those are things like safety. 

With most kids, child-proofing is a good idea and is necessary for a period of time.  But with Cora, to me it seems so much scarier and more pressing.  Things like making sure she can't get out the front door become huge fears.  I imagine her turning both locks, opening the doors and darting into the street.  At four years old, you'd think that these concerns would lessen, and with a typically-developing kid that may be true.  But for us, it hasn't.  So we have a lock at the top of our door that she can't reach even with a chair pushed against the door.  It's a pain, because it's only installed on the inside, so if we are inside the house and don't hear Nick at the door, he can't get in without going around to the back door.  But it gives us comfort, knowing that Cora can't get out the front door without an adult assistance, and that the back door is behind child gates and door-knob covers she has yet to master.

And of course, most importantly, we reinforce, reinforce, reinforce, telling her that we only open the door and go outside with Mommy or Daddy.

Something we've been working really hard on for the past couple of years is our script when crossing the street.  "Stop.  Wait.  Look for cars.  OK, it's safe.  Hold hands and cross."  Every single time.  For the past couple of years, this process has often felt pointless.  It really didn't feel like she was getting it, and her tendency to bolt and run off caused me serious fretting and probably several new wrinkles.  But we have kept it up.  And it finally seems like it's paying off.  Now, as we approach a curb, I pause and wait for Cora to start our script.  Now she will stop and and wait and look around for cars, yelling "Car!" if she sees any approaching.  This milestone that I worried we may not reach for years seems to be coming around.  But still I worry.  Still I know that I must be hyper-vigilant, that her new-found awareness of this potential danger is likely still not enough.  I worry about preschool field trips, and whether others will know to be as cautious as we are.  I worry that as Ruby starts to walk and I have two kids going in two different directions, if I can count on Cora's training to keep her from stepping into the path of an oncoming car.  I know all parents worry about these things to some degree, but it seems different with a child with an intellectual disability.  You worry for longer.  You worry that all the training may not seem relevant if the situation is slightly askew, as situations in real life tend to be.  You worry when you read about children much older than Cora who still struggle, and those who have gotten seriously hurt and worse.  You wonder as you see school-aged kids running around with a certain level of autonomy whether you'll be able to relax enough to let your own child explore and play in the same way.

It's hard.  It's scary.  It keeps me up nights and has me constantly brainstorming ways to help keep her safe, and ways to help teach her how to keep herself safe.  Because as many safeguards as I try to create, ultimately I am teaching her how to do it for herself.  And I hope that all my teaching and all my repetition will pay off.