Saturday, February 28, 2015

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.

Monday, February 23, 2015

Tired, but alive.

The days, weeks, and months are going by so quickly.

This girl is almost 8 months old.  Shocking, I know.

It's been such a blast to see her skyrocket through the little baby stages, and she is well on her way to becoming a toddler.  After the leisurely pace of Cora's development, it's often startling to see Ruby do so many things with such ease.  She just started crawling, and she's starting to say words and sign. 

For weeks she's been getting around by scooting backward, or going into "downward dog" again and then sitting up over and over, until she ends up in a different place.  But those methods haven't been able to get her to where she wants to go.  Which is usually toward Cora or me.  Now that she's figured out how to propel her 20 pounds of baby flesh forward, I think Cora's going to have to watch out.

But the girls together are such a blast.  Although Cora still doesn't want to get too close, lest she get pinched by Ruby's razor-sharp fingernails or have her hair pulled, she is really enjoying making Ruby laugh, and watching Ruby play with the world.  Seeing these two grin at one another and then erupt into peals of laughter may just be one of the best things ever.

If only I were able to enjoy this ridiculously adorable phase with a little more clarity.  Ruby is following in her sister's footsteps and has been spending her nights keeping me awake.  After over four years without nearly enough sleep, being in this drawn-out phase of acute severe sleep deprivation is wearing me so very thin.  All those people that proclaim babies to sleep in 2-3 hour stretches have obviously never met my kids.  So we're inching by, in between bouts of sickness, and the cycles of busy-ness in between.

I'm trying to hold it together, actually holding it together only some of the time, and enjoying these two as much as I can, in the meantime.  I just keep hoping for a little more sleep.

Friday, February 6, 2015

How it Flies

The other night I had the rare experience of lying down with Cora at bedtime.  Usually I am in charge of the wee-one, who still wants only her mama at night, and has a pair of lungs that can easily keep her older sister from drifting off to dreamland.

I held her little self close, and smoothed her hair, whispering to her made-up-on-the-spot stories about Cora and Ruby and listened to her giggles.  After the days of listening to her argue and yell, always wanting to do things in her own little way, which seldom really jives with the way it works best for me... well, that little snuggle session felt pretty sweet.

And I couldn't help but thinking, "Oh my word, this girl is four, she is FOUR, she is four."  How could four years have already passed mothering this little turkey?  I had to make myself remember her tiny little baby self, tucked up in the NICU, hooked up to her apnea monitor, getting milk through her NG tube, and even getting handed to a kind nurse decked out in scrubs for her little body to be opened up and her heart be made whole. 


All this time has passed between those moments.  My baby has become my little girl.  My silly, creative, curious, lovely, and sometimes infuriating little girl.  It's a trip, this parenting thing.

It changes oh so fast.  The moments when you feel stuck and overwhelmed, the moments when you feel blissfully at peace, all of them keep flying by. 

These days life feels pretty different than I may have thought it would four years ago.  Our days are filled with song and dance, imaginative play, art projects that barely seem worth it they're over so fast, endless cleaning and constant errands.  They're filled with the most incredible little preschool and a very funny baby sister.

 They're filled with a strong-willed little girl who likes to show us who's really the boss. 

They're filled with play-dates with new friends, and watching my shy little girl keep mostly to herself and then talk and laugh about how much fun she had after her friend goes home.  They're full of conversations with other parents that aren't always about Down syndrome, and these days often with parents whose own children don't have disabilities.

They're full of way too little sleep for me, a to-do list that never ends, and a feeling of always being stretched too thin and needed too much.  They're full of never-ending runny noses from school, and long rainy days.  They're full of missing my own friends and always telling myself how I need to prioritize my self and my adult relationships, too.

And they're full of laughter and games of peekaboo (or "kaboo!" as Cora likes to say), and hiding under the blankets in the guest room.  Skype dates with family, and long walks in the stroller.

They're full of life.  It's not really what I had pictured it to be.  It's pretty ordinary, largely exhausting, and overall a beautiful blessing.

My life with my awesome big four year old girl, and her sweet little sister.