Grace Upon Grace.

It's the little things in parenting and in life that make our days wonderful or put us over the edge.  Small moments and small talk make up the vast majority of our lives.

Yesterday, those moments had me on a bit of a roller coaster.

Caroline finally had a night where she was only up once!  But for an hour and a half of tears.

Ellie, with her tiny little nose and nasal passages, like many of her peers with Down syndrome, has hit the season of "super snot" from about November until March.

Caroline had a tummy ache and was inconsolable.

We had a 30 degree morning and I hadn't unpacked the winter gear yet, and Ellie had one mitten.

No big deal.  I dropped Ellie off at school, apologized to her teacher for her bare hands (the teacher laughed), said a silent thank you to Aunt Bonnie who had sent a hat after we moved, and came back home with Caroline.

I put her in a sling and managed to make cookie dough.  A friend (a kid friend) was coming over after school to make roll out sugar cookies.  House was prepped.  Caroline and I went to Target to pick up the rest of the ingredients for our Thanksgiving contributions.  I found the Ninja Turtle requested by a little boy who lives in a homeless shelter.  (Our church buys presents for the families at a local shelter each year.  Who knew Raphael was such a hot item?)  We stopped at Great Harvest and picked up bread for my first attempt at totally from scratch stuffing/dressing.

The grumpy one slept, albeit only with me holding her.  I read some emails that were exceptionally nice.  I found the buttercream recipe my mom used when I was a kid, and I assume she still uses it on her Christmas cookies.  I assembled ingredients for tomorrow's cooking spree and wasted time on Pinterest while Caroline slept in my arms.  I picked up Ellie.

Little things.

We came home, had a snack, and were ready to bake.  I washed a few last minute dishes.

And my feet got wet.

And there was water coming out from under my sink.

Little things.

As I was calling my friend to say, "Don't bother bringing your daughter" she knocked on my door.

And her kids played with Ellie and she held Caroline and I cleared out all the cleaning supplied we keep under the sink and mopped up the water and taped up the sink and called the plumber and made a game plan.

I'm an extrovert.  I hate making those decisions alone.  I need to talk through them.

So a plumber is coming today, we didn't make cookies or pizza last night because we can't really wash dishes, and my kids didn't sleep last night.  I've been up since three in the morning and I anticipate not sleeping until tonight.

Ellie's snottiness kept her awake.  She heard her sister (Matt was feeding Caroline in the living room) and wandered out, convinced it was morning.  I took her to the basement to sleep and she slept sitting up, murmuring about the old house being empty.

But ninety minutes later, she bounced up the stairs and told me her nose was crusty but she's okay, and we couldn't make cookies because the sink was broken and maybe the sink would be fixed and there are birds outside saying tweet!

Grace upon grace.  In little ways.

And the little glimpses of grace throughout the day kept me thinking about how easy it is to give those glimpses of grace to others.

In the next couple weeks, I'm going to put together my "giving" post with great ideas for gifts that give back and organizations I love.  Because we can all give.

Ellie's Thanks.

Ellie, what are you thankful for?  What things do you love?  What makes you happy?

Her responses:

Caroline.
And Mama, too.  And the six.  (There's a six on my marathon shirt.)

(Putting a pacifier on a board book like a serving tray) And PIE!

(Caroline starts crying and I give the pacifier back to her.)  NO!  That's the PIE!

(I find a toy to be pie) I found a piece of pie!  It's a big piece of pie, Caroline!


So what else are you thankful for?

Cocoon.

Another successful Ellie interview.  El, anything else?  Any other people you love?  Who do you pray for?

Daddy, Mommy, Baby Caroline.

Who else do you pray for?

I pray for God.

Thankful for Sisters.

Being a parent is hard, but I'm thankful for Ellie's recent demonstration that we're doing something right.  She's a great big sister.

Ellie had a snotty nose and a cough, nothing terrible, but enough to make her slightly miserable.  Early in the morning, she was sitting with me in her bedroom, snuggled on my lap.

Caroline started to cry.  We both paused, noticing the sound.  "What's that?" I asked Ellie, anticipating her frustration.  Her time with Mommy was about to be interrupted.  I was pleasantly surprised with her response.

"Caroline is crying!  I'll go take care of her!"  And she ran off to comfort her little sister.

I don't have nearly as many photos of Caroline as I did of Ellie at that age.  Part of it is having two kids, and an equal issue is that Caroline prefers the baby carrier to the stroller - I'm challenged to photograph a child who is always strapped to me.  But even without photographic evidence, I forget the love Caroline feels.  When Ellie was diagnosed, I wondered if future siblings might feel burdened by her special needs.  Caroline may someday, but I anticipate a pretty typical sister relationship.

Oh, and for a great encouragement having an oldest with Down syndrome, go read http://www.confessionsofthechromosomallyenhanced.com.  The author has a big sister with Down syndrome.  She and her husband adopted a little girl with Down syndrome and went on to have two more typical little girls.  

{31 for 21} A New Normal.

I took signifiant time off work when Ellie had heart surgery.  It's been over four years, and now I'm taking a school year off to stay home and take care of Caroline.

It's good.  And weird.

A new normal.

I'm starting to search for a rhythm to my days, and seeking good time with adults.

I don't have a team of professionals coming to help teach my kid.

I'm thankful for this time, not just with Caroline, but with Ellie.

I'm going to her school parade today.

Here's a preview from my phone at 6 am.

26/52.

This is week 26 of my participation in the Practising Simplicity weekly portrait/photograph of my daughter.

In 12 weeks or so, I will have a second daughter to add to these posts.

Wow.

Today's shot isn't a portrait.  This is a shot from swim lessons, and I grabbed my camera with my portrait lens still on.  I meant to grab my zoom, but that's okay.  I just had to stay back so Ellie wouldn't see me and freak out.

That's my kid.  She's high-fiving her swim teacher, just getting out of the pool.

She's not crying.

She's not yelling.

She's not a little barnacle.

In fact, she's happy.

Sorry for the small photo size.  I think it's totally worth it.

Happy weekend.

What I'm Reading/Watching/Making.

Here's some of what I'm reading this week.  Enjoy!

Two Babies, a story about Down syndrome from Dave Hingsburger.

These fun gallery walls on I Heart Faces.

I just bought a new John Green book, "Looking for Alaska."  I'll let you know what I think!

At the end of last week, I got out the saffron I received as a teacher gift and finally got busy cooking! This stew was delicious.

And finally, some wise words about celebrating what is good in our children.

Thankful: Day After Thanksgiving.

It's early.  I'm tired.  Ellie is eating a waffle.  My tree is already up.  My belly is full of turkey and stuffing and pie and pumpkin squares.  My husband is upstairs, hopefully asleep.  (Ellie woke up before four and got out of bed at 4:45.  It's his turn to rest.)

Today the Christmas music will begin in full force.  People will trample each other for deals on stuff.  Most of my shopping is done already, but I may grab a few more gifts depending on where we find ourselves today.

The last two years, I've cooked Thanksgiving dinner for groups of friends.  I love hosting the big meal and creating a special experience for the people we love, but there's something really special about spending Thanksgiving with my extended family.

Focused on turkey.

Ellie was spoiled rotten and loved it.  I saw relatives I haven't seen since Ellie was a baby.

I didn't take a ton of photos, because I was soaking it all in/trying to figure out where Ellie was.

Creepy clown pilgrim.

Big cousin (whatever my cousin's kid is in relation to my kid) showing Ellie the snow.

Not happy with snow.

Poor Ellie, just to keep  her confused, we made sure she has not only an Uncle Mike and Uncle Mark who are her actual uncles, but I also have an Uncle Mark and a cousin named Mike who we refer to as Uncle Mike.

When we arrived and Ellie walked through half an inch of snow, she begged to build a snowman.  When we finally gave her the opportunity, she remembered that snow is really cold and she didn't like that idea anymore.

Uncle Mark retired so he got a tree of scratch off lotto tickets.

As we move into the Christmas season, work is busy.  Life is busy.  My weekends are already scheduled with the Nutcracker and parties and photo sessions and gingerbread house building and the church Christmas pageant and tea and general Christmas fun.  I want to soak it all in and still enjoy the season of Advent and waiting and expectation.

Oh, and I'm cooking Christmas dinner this year, so I guess I will add kitchen time, with my small and adorable assistant.

Happy Thanksgiving.  And Merry Christmas season.

Happy Thanksgiving.

Another Thankful Post.

Today I am thankful for….

* a husband who caved to my wishes and let me put up the tree early, so I now have decorations up for two holidays.  I am doing as much of the work of Christmas as early as possible so I can enjoy fun and reflection in the weeks leading up to the holiday.

* looking at our old Christmas cards and seeing how Ellie has grown and changed.  I have our first three cards framed, and I seem to be missing the 2012 card, so I'll be digging for that later today.

* coffee when a little girl wakes up at 5:25 am, and that is "sleeping in."

* plans to make a pumpkin pie this afternoon, just because I really like pumpkin pie.

* locating a big box of Christmas books that I'll wrap up (again) for Ellie as a daily Christmas read.

* the upcoming excitement of seeing family over Thanksgiving.  Thanksgiving is the big holiday for my extended family and I love when we get to join in.  My aunt asked me what Ellie wants to eat and I lied and told her my favorite Thanksgiving treat.  She was suspicious, but I think she'll make my favorite pumpkin squares anyway.

* Family Fall Foto Fest.  We have a family photo contest for Thanksgiving, with fun prizes and a lot of pride on the line.

* memories going through the ornaments.  My grandma bought each of her grandkids an ornament each year after Christmas for the following year's tree, and wrote our names on each box.  I still have a lot of the boxes.  We each collected a series.  My angels have a lot of wings missing but they are all on the tree.  I also found ornaments handmade by my next-door neighbor from when I was little.

* a little girl in glasses.  (OK, I typed that and she took them off.)  But a little girl who is wearing them without a major battle!  (Update: They are back on to watch a show.)

* plans to make Krinkles later today.  Shhhh, don't tell Matt.  But he doesn't check this blog anyway.  They are his favorite Christmas treat.  Family, I plan to bring them to share for Thanksgiving but I make no promises with Matt around.

* the Coca Cola Christmas music box from the early 1990s that my mom had in our house at Christmas and passed on to me.  Ellie loves it.  She spins around and dances.

* Ellie's new snow boots, purchased for an upcoming trip that will probably not feature snow, a change in the weather prediction since I rush-ordered the boots.  But they are super cute.

* Penguins of Madagascar holiday movie.  Ellie and I love it.

Have a wonderful weekend.  What are you thankful for this weekend?

Thankful for Bears and More.

Sending a child to school means that the child learns things for which you may have no context.

Like "We're going on a bear hunt, take a camera, close door, squeak!"

Super adorable, but what the heck was she talking about?  It took about two weeks of Ellie singing for Matt and I to figure out exactly what she was saying.

While her recent camera obsession has already prompted us to get her a camera for Christmas, some googling led me to this book.

We're Going on a Bear Hunt

You can bet that's added to the list.  I'm thankful to be in a position where I can buy Ellie books on a whim.  We love books.

Here are some other things I'm thankful for right now….

Ellie looking adorable in her glasses.  Day two:

She also looks great with a cone on her head.

I passed my National Boards for teaching.  Big deal.  Huge relief.  I found out very very early this morning.

Scores are released around midnight and from 11:30-12:20 the system was basically locked up with other hopeful candidates like me obsessively clicking "refresh."  I took a bad picture of the screen and could barely type my name, I was shaking!

Matt is exhausted because even though he went to bed (at my request) while I awaited my score, he was more nervous than me.  And more excited.  So grateful for his support and to be done with the NBPTS process.

My favorite Christmas treat is in stores again.

Get excited.  Or mock me.  Whatever.  But this stuff makes my Christmastime coffee sooooo good.  I'm already using my new Christmas tree mug, which I purchased on clearance last January.  I held out for a long time.

I have great friends who care.  Friends who organize sock drives for the homeless as the weather gets cold.  Friends who organize Turkey Bowl to feed the hungry.  Friends who live out their faith.  I love those people.  The same friends who see each other more rarely in our 30s than we did in our 20s, but who still love and care.  Oh, and having friends for 10+ years as transplants to DC?  Amazing.

That photo?  Ellie's first Turkey Bowl.  Her second Turkey Bowl was a bit better.  We'll see how tonight goes; she may even try her hand at bowling.

Happy weekend.  Enjoy.  Give thanks.  Have fun.

And hug a turkey.

THANKFUL!!!!

This is a series of photos I received via text from Ellie's teacher today.

If you've been following this blog for any length of time since May, you know these glasses are the bane of my existence, and I refer to them as the $300 I flushed down the toilet.

Well, I have HOPE!  And isn't Ellie so cute wearing the glassies?

Done.

School is out for the year.

This summer, I'm taking a few classes, but mostly, I'm taking vacation.

I am so thankful for the people who work with me, who love kids, who do whatever they can to make sure kids are learning, and who are fantastic friends and colleagues.  I am so thankful that I get to go to a job I love each day.  And I am so thankful for some time to slow down and reflect after my attempt at National Boards (results don't come out until November) and my first year as the teacher-mom of a "school age" kid.

Even if that kid was two when she started school.

She's changed a lot from September….

to June.

Ellie is speaking in sentences at home.  Not long sentences, but sentences, some of which have semi-appropriate syntax.  She is confident.  Her teacher encouraged her to speak, to participate, to play and run on the playground, and to jump right in.  Ellie did - most of the time.  I heard a great story today that involved Ellie laying in "the beached whale position" as the students were heading out to a fire drill, so she still has lots of work to do, but she's come a long way.

Last night, Ellie couldn't sleep.  I was laying down next to her trying to calm her down, and she began to tell me who she loves at school.  Included were her teacher, one of the extended day staff, the cafeteria manager, and a few friends.

I'm sure she'll love the preK 3-4 class just as much.  But first, summer.

New Lens.

I got a new lens for my camera.  I'm still figuring it out (i.e., it's super heavy, I didn't hit the Vibration Reduction switch until I'd tried it out for awhile wondering why the shake was so noticeable, having zoom after being completely used to my 50mm/1.8 that I NEVER take off my camera) but I'm excited to have the opportunity to learn something new and take shots from farther back.  Ellie makes a cheesy face for the camera now, so the farther away I can stand, the better!  Plus, I think this lens will be fantastic for vacation shots.

Here's a few photos from a short walk with Ellie today.

I go running.

This face.  Every time her shoe comes untied, it's a crisis.

Cheesy girl.

What's making you happy lately?

Happiness Lately.

Some things bringing me happiness lately, in no particular order:

* This season of running, despite lackluster training, has yielded good results.  In the last two months, I've placed second in my age group for 5K, third (out of five) in a marathon, and now fourth in a 5K.  The best thing about the latest race is that three of the little girls I help coach placed in the kids' division.  I'm so proud of them.  Matt and Ellie came to cheer.

* I saw two old friends and their significant others for dinner on a Thursday night and we spent time laughing together, and just being together.  There's something comforting about friendships that pick back up and grow to include our spouses/kid/girlfriend/etc.

* Matt and Ellie are on a camping trip.  Hopefully more on that soon.  I love that they are spending this fun time together.  I used my extra time to get all of Ellie's toys organized and cleaned up, to go through old clothes, and to get a few little things like that accomplished.  Not glamourous or fun, but absolutely needed going into the final month of school.  (24 days, in case you were wondering.)

* Sunshine after what felt like an extra-long winter.

* My new lens (my Mother's Day/Birthday gift) arrives on Tuesday, and I'm anticipating my camera coming back out from winter hibernation.

* The pool opens on Saturday, and I've been excited watching it filled, seeing the chairs appear around it, and knowing that soon, all the neighborhood kids will be splashing and laughing.

* And coffee.  Because coffee is great.

Information is Critical.

When I found out that I was pregnant with a child with Down syndrome, I was offered support that included connections to other parents, books, and pamphlets.

While we were asked what our plan was if the testing revealed a chromosomal difference, termination was never presented as a more favorable option than the choice we obviously made - to raise our daughter, regardless of her chromosomal makeup.  Our experiences with doctors were generally positive, but anecdotal evidence (and probably real statistics somewhere) suggest that this is not the normal patient experience.

On Friday night, Ellie and I got to meet my online friend Stephanie and a whole bunch of other cool people at a dinner coordinated by the National Center for Prenatal and Postnatal Down Syndrome Resources.

Stephanie is one of the brilliant minds behind Diagnosis to Delivery, a book written specifically for families with a prenatal Down syndrome diagnosis who are awaiting the birth of their child.  It was published within weeks of our diagnosis, around the time the site www.downsyndromepregnancy.org launched. Those resources are incredible, and I recommend them strongly to anyone living in that tough time between knowing your baby will be "different" and holding that child.

Even more strongly, I recommend getting to know Stephanie and the other folks who have worked tirelessly to ensure that the individuals delivering a Down syndrome diagnosis are presenting the reality of life with Down syndrome, rather than making value judgements or assumptions that life with a child with Down syndrome, a child like Ellie, is miserable.

They've published a booklet called Understanding a Down Syndrome Diagnosis that is honest.  While it covers the realities of life in the year 2014 (including termination as an option and mentioning medical and cognitive challenges people with Down syndrome face), the booklet primarily explains the opportunities available for kids with Down syndrome.  Stephanie shared with us something that she'd shared with genetic counselors.  I'm less eloquent than her, but I'll try.  Sixty years ago, a parent with a new baby with Down syndrome would be told that their child would not learn to read or write and should live in an institution. Today, parents are told that their babies will probably read and write, probably go to school with their peers, and probably will be able to live semi-indepdently and work, and even have a post-high school experience.  But the extra chromosome and genetic makeup of people with Down syndrome has not changed.  Only opportunities and medical advances have altered the landscape so dramatically.

The national organization for genetic counselors has determined that this booklet is appropriate for families who are in the decision making process.  And while I knew that regardless of my child's diagnosis, Ellie would becoming home with us, not everyone undergoes genetic testing with their mind made up.

Since more and more women are having prenatal genetic testing thanks to non-invasive tests, more women will be getting that call.  "Your baby has Down syndrome."

Since a blood draw feels like no big deal in pregnancy compared to the highly invasive CVS testing I experienced, more women will be getting that call without having been forced to consider their next step.  When you have a major medical procedure, you think a lot.  If you are pregnant, a blood draw is no biggie.  I lost count of the times my blood was drawn and the reasons.

Understanding a Down Syndrome Diagnosis helps families understand the opportunities that exist for their unborn child, so they can make a decision with all the information.  The more families understand the reality of Down syndrome, the better.

Check out some of these resources:
Brighter Tomorrows for parents.
Brighter Tomorrows for medical professionals, who may be delivering a diagnosis.
Lettercase.

Many of my fears about Ellie were based on ignorance.  Many of my fears were calmed by the resources provided by the team at Down Syndrome Pregnancy.

Sun, Outside, and Some Good Reads.

After I spent several hours this morning pouring over a paper on how "assessment informs instruction," I was grateful to get home to Matt and Ellie and brilliant sunshine.

A few piles of snow remain on the shady side of the courtyard, but we sat outside with a few other families and chatted.  Turns out that one of the other moms is basically a professional paper airplane maker, and Ellie was fairly determined to make a plane fly.

Flying!

The plane kept landing behind her.

She did better just pretending to make it fly.

She eventually gave up and settled for pushing a friend's baby stroller around and laughing hysterically whenever a paper airplane hit anyone.

A little sunshine is so good for the soul.  The grass was still wet from the melting snow, and there was a cool breeze, but it was exactly what we needed.  Ellie is napping and the house is peaceful right now.  I was happy to get my camera back out, even for a few minutes. I want photograph more this spring.

Enjoy your weekend.

In case you missed it, here's Ellie's latest quotes.

Other good stuff this week?  This blog hop.

And this is more than a week old, but it's a wonderful post.

Lately.

Lately, Ellie's been nothing but a chatterbox.

This morning at 5:19 am, I removed her from the kitchen table, where she was quickly approaching my coffee, yelling "MOMMY'S COFFEE!" at the top of her lungs.  I'd left her alone for 3.6 seconds.

When she got in the car on our way home today, she instantly checked her drink holders for snacks.  She came up empty handed and said, concerned "There no goldfish in here!"

As we were getting out of the car, I heard an adorable little voice singing in the backseat, "Twinkle twinkle star, twinkle sky…. good song… yay!"

While she was drinking her water, I was assisting her with an open cup.  She pushed my hand away, told me "NO!" and then dumped the water out with a smile.  "I splash it!" she proclaimed.

These little moments mean a lot to me, because they mean that Ellie is doing what I hoped for, but what I was scared to hope for - talking!  Nonstop!  And even though speech has been Ellie's relative strength for awhile, and even though she has so much work to do in so many areas, and even though her speech is still delayed for her age, I can stop and celebrate these little milestones.

I love to hear what's on her mind… most of the time, when she's not requesting that I sing "Happy birthday Curious George" before 5 am.

I said that this year I'd be better about taking pictures, but my house is a mess and outside has been cold, or rainy, or snowy.  Today is nice but Ellie is a hot mess and sitting in the kitchen drinking milk, and probably splashing it on the floor.  So instead of pictures, today I just wanted to capture little moments in writing so I can remember them.

And maybe, just maybe, so I can remember to keep the car stocked with goldfish.

I Heart Faces: Best Face of 2013.

My favorite face of 2013…. In Naples, FL, two years after Ellie's open heart surgery, right before she started school, exploring the beach.  2013 was our first surgery free year for Ellie, and that made it a good year.

More lovely faces are right here.

 

Thanksgiving 2013.

Our Thanksgiving 2013 in review:

Our day started with our community 5K, which was frigid.  When I grabbed water at Mile 2, I received a cup coated with ice.  Although Matt started with Ellie in the back, they passed me around mile 2.5.  I had plans to run a fast time, but I forgot to train.  Whoops.

The table.  I invited our next door neighbors by saying,
"Come for Thanksgiving.  And bring your party table."

My neighbor and I spent all day Wednesday in my tiny kitchen, cooking up potatoes, sweet potatoes, corn, cranberries, stuffing, and pie.  Thursday was turkey, green beans, and gravy, along with baking everything from Wednesday.  Ellie watched part of the parade and liked the horses the best.

Ellie's art from school.

Matt and our high school freshman neighbor carved the turkey.  They had a large knife and we were all scared. (Matt just gave me a look.  He thinks I should trust him more.  In his defense, both Thanksgiving and this blog post were injury free.)

Note Gram's silver.  Makes me smile.

Kids played in the living room tackling each other.  Ellie gobbled like a turkey for our entertainment.  Baby Louisa cried when she wasn't fed fast enough. Ellie stole Maria's cute boots and tried to walk in them.  We watched movies and ate.  And ate.  And ate.

For some of our neighbors, a family from Spain, this was their first American Thanksgiving. We are absolutely blessed with our neighbors.  Both Kyle and Kelly's family (with whom my regular readers are well acquainted) and our next-door neighbors made our Thanksgiving more fun.  My grandmother's silver was out.  One of Kyle's co-workers joined us.  There were multiple languages spoken around the table.

And there was a lot of laughter.

I accidentally dropped these.  I served featherless turkeys.

Today, I am making turkey stock for the first time, and we're decorating for Christmas.

Happy Holiday Season!  Merry Christmas!

Choosing Thankful.

Today, I am choosing to be thankful.

I am thankful for my little munchkin, who is currently singing "Head, Shoulder, Knees and Toes" to a stuffed polar bear.

I am thankful for Matt, who did not attempt to stop Ellie and I from watching Elf this week, despite his passionate feelings that Christmas movies are for after Thanksgiving.

I am thankful for the kids I get to teach every day, and for my little kid I sometimes see during her school day.  I am thankful that, although often not listening, she always is excited to go to school.

(I am NOT thankful that she just dumped out all of her crayons on the carpet.)

I am thankful for friends, and thankful for our church.  I'm thankful that our church has always treated Ellie just like any other kid.  I'm thankful for phone calls just to chat.

I am thankful for a child who is speaking in 3 word phrases more and more, even if those phrases include the word "MORE!" all the time.  ("More chocolate please!" "Want more cereal!")

I am thankful for hot coffee and a warm house when the weather turns cold, especially right now as the wind blows outside.

I'm thankful for play dates and dinner and laughter.  I'm thankful for the ability to host Thanksgiving for a fairly large and diverse group of friends, and I'm excited to share traditions together.

Finally, I'm thankful that right now, as Silent Night plays on Pandora, Ellie is taking that as a cue to put her stuffed robot to bed.  She's currently shushing the robot and putting a blanket on her.

This week, my goal is going to be to give thanks in all circumstances.