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.

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!

More Snowed in Fun.

First piece of news:

A plow arrived!

Whoohoo!

Monday was another day with streets covered with nearly two feet of snow, spent perfecting our gently sloped backyard sled run, and photographing Caroline in the dress intended for her baptism, which will not fit come April and the reschedule date.

Ellie coloring early Monday morning.

Blue eyed beauty in her baptism dress.

Sisters.

Sisters.

On Monday, Christina and I took a walk to make sure we could safely transport her to the other side of town, we sledded, we made pancakes, and we continued to make the best of the blizzard.  The girls were sad to see Christina go - they both took naps for over two hours!

Some phone photos:

Caroline fell asleep like this.

Sledding in the yard.

My big girl, so brave with shots and animals, is not usually brave with adventure-type activities.  (Which is weird, because as a baby she loved to swing high.  Those days are done.)  We loved seeing her sled!

#snowzilla #thestormnotthebrother #Jonas backyard sledding

A video posted by Megan Landmeier (@meganlando) on Jan 25, 2016 at 9:23am PST

Snowzilla.

The plan was for Caroline to be baptized today, but church is two miles away, the roads aren't cleared, and the Department of Transportation is requesting people stay off the roads.

From Friday until late last night or early this morning, DC and the surrounding area got slammed with about 20 inches of snow.  (More in a lot of places, but the closest official measurement I could find was 20-21 inches for a mile or two away.)  Fortunately, we had ample warning and plenty of supplies including Cadbury creme eggs, ice cream of both the dairy and coconut variety, taco fixings, soup, coloring books, and in case of emergency, firewood, flashlights, and a pour over to make coffee.

So instead of baptism, Caroline's godmother is snowed in with us for the historic storm, and we are enjoying a weekend of sledding, shoveling, coloring, reading, and family.

Today I'll get some real pictures of the girls in the snow.  Yesterday the snow was still falling and we were trying to navigate though nearly two feet of snow, which means snow well up to Ellie's waist.  She couldn't really walk.

Here are some phone photos:

Caroline, our neighbor, and Ellie in the snow.
Caroline enjoyed it more than this photo shows.

Christina got this picture of me shoveling.  Second time in my life!
This was only halfway through and before the heavy snow started.

Yesterday, as we sat in the basement playing Scrabble, Elsa caught our attention.

Time out: If you are unfamiliar with Giant Elsa, let me fill you in.  In December, my mom let me know her package for Ellie for Christmas was en route.  I asked if I should open it and wrap it.  She said no, because then I could be surprised.  I obviously was scared.  Well, the packing slip was on the outside of the box so I called my mom when a box labeled "My Size Elsa" arrived on my front door.  

Ellie loves it.

The rest of us are a little scared.

Meet Elsa:

Blurry but in awe.

Now that you know Elsa....

So not the weekend we expected, but pretty good so far.  Caroline, we love you and we can't wait for your formal inclusion in our church family... in April.

{31 for 21} Buddy Walk.

A few photos of a day that celebrates people with Down syndrome.

With Uncle Mike.

Giant Slide!!

On a horse.

With her sign.

{31 for 21} #ChangingTheFaceOfBeauty

Look who is in the customer section the Hanna catalog!

Click here.

Holiday catalog.  Page 3.

A photo posted by Megan Landmeier (@meganlando) on Sep 30, 2015 at 4:22am PDT

{31 for 21} Low Expectations.

Every October, a group of bloggers commits to writing 31 blog posts about Down syndrome.

I've faithfully participated for four years.

Now, you might gather from the title of this post that it's about people placing low expectations on my daughter, but that's not true.

Have low expectations of this mom with a newborn.  I'll do my best.  I might not write 31 posts.  I've

Now, onto today's post.

When I counsel pregnant moms with a Down syndrome diagnosis, they often ask if their new baby will look like their other kids.  Only having had one kid (with Down syndrome) until last week, I never had personal answers to give.

Enter baby Caroline, my typically developing newborn.

Brand new Ellie on the left.  Brand new Caroline on the right.

I'd say they look alike.

Photo credit: Whoever was in the OR when I gave birth.  Possibly my husband?  Possibly the nurse?

I just showed Ellie the pictures and she couldn't tell who is who.  Although she's seen the baby picture of herself many, many times, she pointed to Caroline and said, "That one is me."

I guess I should make sure my printed photos are well organized and labeled.

Happy Mother's Day.

To my own mama..... Happy Mother's Day!

Thank you for being a fantastic Mom and a fantastic Grammie.  I know that Caroline will agree with Ellie that you're the best, although I anticipate some issues with sharing the Grammie-love.

A Penguin Party For a FOUR Year Old.

Ellie celebrated her birthday with friends this morning at a little penguin party at our house.

I vowed to keep my work to a minimum, a vow I mostly kept.  Since we had two snow days in a row instead of two days of parent teacher conferences, I added a few last minute details, but only details I could pull off without leaving the house.

Ellie had a blast.

Almost all of the food was purchased.  I got bread from Great Harvest, I bought cupcakes from Fresh Market, and I even ordered custom cookies instead of pouring hours into cake pop production.

A photo posted by Megan Landmeier (@meganlando) on Mar 6, 2015 at 2:16pm PST

The only things I made were a quinoa salad and a bowl of blue jello "ice."  I purchased black and white plates and straws on clearance at Target a few weeks ago, and I just added pink and blue sparkle scrapbook paper labels to bring in some color.  I had plain white plates and pink bowls leftover from other events to use as serving dishes for Swedish Fish and goldfish crackers (fish food for penguins), and we also put out fruits and veggies.

As Ellie gets older, she understands much more about parties and traditions.  On Wednesday, she knew she was four and got presents.  Today, she knew it was her party day, that we would sing "Happy Birthday," and that her friends would come over and eat cupcakes.

Tip: If you purchase mini-cupcakes, don't use a giant candle.  The cupcake was a little too top heavy and fell over on the plate.  No one was injured and we didn't start a fire, so I'll consider it a success.

We also had a penguin bean bag toss in the basement for the kids to play with, and I covered Ellie's little table with paper and put out some crayons.

A photo posted by Megan Landmeier (@meganlando) on Mar 6, 2015 at 5:27am PST

Ellie loved playing with her friends.  Throughout the snow days, she would repeat the names of the friends coming over to play.

The penguin beach balls were party favors for the littlest guests, and the big kids got toy penguins and crayons.  Everyone got a custom penguin cookie.

Since Thursday's storm covered our landscape with snow and ice, Ellie and I made crockpot hot chocolate.  The big win?  It's gluten and dairy free.  Almond milk, cocoa powder, a little sugar, a pinch of salt, and bit of cinnamon.  Amazing.  We adapted it from this recipe.

A photo posted by Megan Landmeier (@meganlando) on Mar 7, 2015 at 4:34am PST

Four is off to a pretty good start.

CHD Awareness {Tink&Key Giveaway!}

Ellie was born with a congenital heart defect called an AVSD, meaning that the walls dividing the chambers of her heart, as well as the valves, were messed up.  Without surgery, she would have been unlikely to live past age two.

She had open heart surgery at 5.5 months old, the scariest day of my life.  Even with the repair, her heart isn't quite like yours or mine, but it's patched together quite nicely and she can run and play.  She can participate fully in gymnastics and jump up and down in the living room.

Ellie and Grammie on her third heart day.

Ellie is proud of her surgical scar.  We call it her zipper, and she applies sunblock in the summer and scrubs her zipper each day in the bath.


Every year in August, we celebrate "Happy Heart Day" with a cake.

Before and after of Lucy.  Lucy's mom and dad are my
friends from college.  Lucy doesn't have Down syndrome
so it took longer for doctors to diagnose her heart defect.

Even excluding the online Down syndrome community, we have a few friends from various parts of our lives with heart babies.  Before Ellie's surgery when I posted a Facebook update, one college friend sent great encouragement - her little girl had also been through open heart surgery, and emerged as "a whole new baby."

I didn't realize how true that would be for us until after Ellie's surgery when I stopped sleeping past five o'clock in the morning, thanks to her newfound energy!  We've since had another friend (who I knew in pre-child days) welcome a little girl with Down syndrome and an AVSD.

Ellie's little zipper buddy celebrating her first birthday.

When I purchased a "Zipper Club" shirt for our friend "Baby Audrey's" birthday, I discovered Tink&Key, makers of adorable heart baby wear.

Photo via Tink & Key.

In honor of Congenital Heart Defect Awareness Week, Tink & Key is offering not one, but two adorable shirts for your favorite heart warrior or other miracle baby.

Photo via Tink & Key.

And aren't all babies miracles?  Enter using Rafflecopter below.  If it won't work on your phone, try a tablet or laptop - the plug-in seems to work better on those devices.  And shipping is to US only, sorry international friends.


a Rafflecopter giveaway

And a few more kids who have gone through heart surgery.

Owen's mama has been a big encouragement for me, too!

All of these four/almost-four year olds had surgery the same time as Ellie.  Cora, Kennedy, and Hailey.  Their mamas and I spent a lot of time emailing each other and offering reassurance and tips!

Upper left photo of Joey from Heather Rodriguez Photography. Black and white photo of Leah by Sons and Daughters Photography.