Tuesday, April 12, 2016

Sometimes I'm Surprised.

Hearing Ellie speak in sentences is normal for us.  Her articulation and syntax can be a bit off, but our girl is a chatterbox.

(I hesitate to even write that because it feels braggy and I didn't do anything special to make her verbal.  It's just Ellie.)

Despite the monologue that Ellie provides nearly 24/7, occasionally she says something that captures my attention and reminds me of how wrong my expectations were.

Yesterday afternoon, the girls and I were getting ready to go outside.  I told Ellie to put her Keens on. She asked where they were.  I told her to check the shoe bin.  The entire conversation was yelled back and forth between the kitchen and living room over a fussy baby.

Ellie walked up to me a few minutes later holding adorable little pink Chucks.  "Do these fit me, Mommy?"

I explained that I'd recently found them for Caroline with her old clothes but Caroline was still too little.

For reasons I don't understand, the conversation stood out to me later that night.  Not because of amazing content (although Ellie has good taste) but because it was an ordinary conversation, the exact type of ordinary conversation I spent my pregnancy wondering if I would even experience.

And as I had that thought last night, Ellie came and snuggled next to me on the couch.

"Hey Mommy, can you say 'FARTS!?'"

Because hey, she's five.






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Monday, April 4, 2016

New Perspective.

Ellie walked at two and a half.

She army crawled at ten months.

She cruised a little at 12 months.

Caroline is crawling and pulling up and even taking a couple little cruising steps and she's like a little wrecking ball.

So that brings me to perspective change #1: When kids meet developmental milestones later, they are more cognitively ready for their new skills.

So yeah, Ellie has a cognitive disability, but at 12 months, her cognition was I'm sure beyond that of a six month old.  Ellie had some knowledge of cause and effect, such as "if I keep crawling into that coffee table, my head will keep hurting."

As I'm sure you've guessed, Caroline at six months does NOT have cause and effect figured out.

Here she is, showing off new skills and hanging out in her crib, aka "the baby cage."





New perspective #2:  When I thought about hypothetical future siblings for Ellie, I thought about them taking care of her.

In reality, if Caroline is having a rough night, we have to bring her down to the basement and sleep with her down there because if Ellie hears any crying, she wakes up.

And yells at us, "MOMMY!  DADDY!  Caroline is CRYING!" and then she runs to her sister's room.  "It's okay Caroline.  You don't have to be sad.  Mommy will feed you."

Ellie the sleepless wonder is not only the best big sister, taking such good care of Caroline, but also the ultimate sleep training hurdle.

But as far as perspective, Caroline's earliest memories will probably be Ellie caring for her.  And that makes my heart happy.

Ellie is at school right now, and Caroline and I are getting ready to head out to her six month doctor's visit.  Everything is so different this time around.  Ellie's six month visit was combined with her "Hey, I just got out of the hospital from open heart surgery" visit and her shots had to be delayed.  We couldn't hold her under the armpits.  Caroline was over 19 pounds last month, so carrying her has its own set of challenges.

Off to the doctor we go!
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Wednesday, March 30, 2016

Vacation Wrap Up.

The beach.  The sun.  The water.

It was a good vacation.

A few final photo highlights:

Photo credit random lady on beach.




We're back to the grind today.  Ellie is at school.  Caroline has a cold and is asleep on the living room floor.  We have massive piles of clothing and kid supplies to unpack and put away and no food in the house.  But we're all a little sun kissed and salty haired.  (Don't think one or two showers can remove the amount of sand on my children.  They looked like churros.)

The next few weeks will be a return to routine with gymnastics and school and photo shoots.  But as the weather gets nicer, I hope the next few weeks will also feature some outdoor play!
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Monday, March 28, 2016

Always in Naples/Photo Highlights.

We vacation about once a year in Naples, Florida.  And without exception, we meet another family who has a child with Down syndrome.  (We often plan meet ups, but I'm talking about chance meetings.)

Easter was no exception.  We happened to sit near a family of six girls and one boy, and the boy has DS.  Ellie was of course delighted.

Other highlights have included the beach, the Children's Museum of Naples, and feeding giraffes at the zoo.  We went to the museum for sensory night, so there were very few children, extra sensory friendly experiences, and and additional staff on hand.  Ellie loved it.  At the zoo, we also met the Easter Bunny and a giant chick.  Ellie was thrilled, and I was grateful.  Caroline was unfazed.

Museum fun.

Baby blues.

We wouldn't let her eat sand.  She was angry.

All Ellie wanted for her birthday was to feed the giraffes salad in Florida.



Easter service on the beach.


The Easter Bunny is holding baby Caroline!!

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Thursday, March 24, 2016

How Things Change.

There's so much I want to say when I hear of a mom with a new Down syndrome diagnosis.

Things get better.
You'll have friends.
You are not alone.
You will still have fun.
Your kid will have fun.
You WILL be okay.

Five and a half years ago, I googled "Babycenter Down Syndrome" after seeing some group mentioned in Road Map to Holland.  I signed up, joined this online group and some very nice moms gave me reassurances like those above.

Missy was the first mom.

Selfie from Missy.


Reading about her daughter, I thought, "I could have a kid like that.  It would be okay."

Missy answered a LOT of my questions, and I had plenty of questions.

That didn't end when Ellie was born.  I ask Missy (and a few other folks) all of my Down syndrome questions.  Most of those moms, even if I met them online, I've had the chance to meet in the five and a half years since Ellie's diagnosis.

And many of them have said, "How in the world have you not met Missy yet??"

Well, I finally did!

From this random lady online to a real friend, I am so grateful for how things change.

I didn't know we would still go on vacation and have fun.  I didn't dream that my baby girl (the actual baby) would be at her happiest in the arms of Missy's middle daughter.  Lily said she's around little kids a lot (and she clearly loves them, and they clearly love her) at Down syndrome events.  I smiled and realized that Caroline may also have this gift.

Without Caroline, but WITH a mermaid tail!


Sweet toddler Violette who gave me encouragement made me laugh at the beach as a big kid.  Caroline was the hot commodity.  "Excuse me.  Can you please get me your baby?"

And Ellie?  That baby who made me worry so much?  She had a blast at the beach.  "Miss MISSY!  WHERE ARE YOU!?!?!  LOOK AT MY CASTLE!"



Me and my fears?  I'm sitting on the couch with my five year old who just got out her crayons, colored for awhile, and put her crayons away.  Last night, her baby sister had a rough night.  They're sharing a room right now, with Caroline in the pack and play and Ellie in a twin bed.  I was sick of getting up and running into their room so I got in bed with Ellie.  In the morning, she asked why I was there and I explained.  She comforts her sister constantly - I am so thankful.

Down syndrome has made my world bigger.

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Monday, March 21, 2016

Six Months.

Caroline is six months old, or as Ellie says, "zero and a half."  She's moving forward by sheer force of will rather than coordinated crawl, sitting up, rolling over, eating anything she can get her hands on, and babbling/yelling "dadadadada" and "gagagagagaga" nonstop.  She has a lot of toys but her favorites are anything Ellie tells her not to touch, cords, and long hair to pull.  She has two teeth and an amazing smile.  She wakes up at least twice a night to eat.  She likes the swings and balloons and big kids.  Her head size and weight are in the 94th percentile and her weight is in the 75th.  She wears mostly size 12 month clothes although she's outgrowing the tops.

Happy six months, sweet girl!



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Sunday, March 20, 2016

March 21: World Down Syndrome Day



Tomorrow is WDSD, celebrate with random acts of kindness and a lifestyle of inclusion.  And cupcakes.
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