Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Paul

A note from John tonight, written to Paul Daugherty.  Paul’s writing can be found at http://www.pdaugherty.com/.  His daughter, Jillian, and her husband just celebrated their first anniversary.

Dear Paul,

There’s a small moment I remember from my daughter’s birth.  My wife’s doctor was meeting with us a few hours after Tessa was born.  He was actually very reassuring in telling us that we could be optimistic about Tessa’s life and as he put it, “things are different for kids like this than they were years ago.”  I remember nodding in agreement without really agreeing; the feeling of uncertainty in my heart still unmoving.  At the end of our meeting he looked at me and and joked to ease the tension:

“Two daughters, huh?”

“Yeah”

He smiled.  “Two weddings then.”

“Yeah…I suppose”

My voice said one thing, but my heart said another.  Wedding? Tessa? Are you kidding? I was a bit put off by what I felt to be his ignorance and nonchalance in the matter.  Tessa wasn’t getting married.  

Well…as it turns out he wasn’t the one who was ignorant, it was me.  

I recently was given your book, An Uncomplicated Life, as a gift from my wife.  As I read it, I was struck by the parallels of our experiences. You were able to articulate much of what I felt when Tessa was born.  It was reassuring to know the thoughts I had, the fears I experienced, were not uncommon.  But, the longer I read, the more the tone of my thoughts changed from empathy to joy.  I was able to journey along with your family through school, relationships, college, even living independently.  Everything I read revised my expectations.  Your life with your daughter was filled with challenges and joy…which really is the same as any child isn’t it?  It was enlightening to realize what I had in store in the future.  As I read I became excited to watch Tessa grow, to cherish what the 47th chromosome adds to our lives, and to eventually let her go and join the world, just as you did with Jillian.  

As I come full circle here, I realize my vision for Tessa’s future in the beginning was short sighted.  I just didn’t know and at that point, I couldn’t see beyond my fear.  As my daughter is three now, she has changed that vision.  At such a young age she has taught me that the only limits that exist are the ones we set for ourselves.  Your story has validated this attitude and for that I appreciate you taking time to share your story with all of us.  I guess there’s only one takeaway:  I better be prepared emotionally for two weddings. 🙂

Sincerely,

John

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Dear Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings.  You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry.  I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Wait for it, wait for it…

I’m lounging in a little bucket chair, feet propped on a kitchen step stool.  I have placed a padded car seat headrest to support my throbbing feet.  There are boxes all over the living room, no furniture, but our TV is up and running on an old end table and I’ve got a tall glass of ice water keeping me (mostly) cool.  I have learned in the past few weeks that we are at a point in life where chaos does not suit us well.  Last week was an epic cluster of rushing around to do God-knows-what in preparation for 49 different line items that were a Very Big Deal.

In this very moment, I’m feeling like there’s no chance that we will catch a break and we’ll just keep barreling down the road toward losing it.

But.

In all of the crazy, there’s-so-much-I-can’t-even-make-a-list, what-the-heck-is-going-on???, there is also bright – a new, perfect home that is exactly what we need… two beautiful, healthy little ladies who, in the stress of all the change, still adore each other… our own, happy, loving marriage (about to celebrate seven years running).  Bright.


The days before my summer sets in are like this – this year more than years past simply because of the move (and the stomach flu, because why not?).  The long stretch is coming, the days of evening bonfires and the annual Mommy Ellie Zoo Trip and all the fun that is our favorite season will be here before I know it.  So for now, I’ll just seek out the small reminders of our blessings, knowing that the big, deep sigh of relief is just around the corner.

Summer….. Come on, summer!!

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Four years of BIG

Me: Are you going to be a new person when you are four tomorrow?

Her: Oh yes, a whole new person!

Me: Well, why?  What can you do when you are four?

Her: Oh, almost drive a car or van or anything that moves.  And go to the city, but not work.  I’m too young to work.  And I can chop down trees.  Tomorrow though.  Not today.

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Slow down, my little love.

Before she was born, I sat in my sister-in-law’s living room, watching my nephew Jack run around in circles and thought that I wasn’t quite sure if I could handle being a mom.  She assured me that the baby wouldn’t come out of the womb quite as energetic as her lively two-year-old…  slowly but surely, she would grow into toddlerhood and I would be ready for it because I would grow with her.

She was right.  Baby Ellie crammed herself right into our little life – never snuggling in, but making her presence known in every moment with coos and smiles and belly chuckles.

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By the time she was one, we referred to the Ellie that appeared between 5 and 7 PM each night as Tornado Ellie.  And while I would never call her rambunctious or wild (well, maybe a little wild), Ellie’s infectious energy has kept us melting onto the couch after bedtime for 1,460 days now.  Her first word was cuckoo.  From there, the other words poured out… tee-coo (thank you), hello, tree, papa, amen, beer…  Ellie innocently delivers a well-timed punchline to every moment.  She is a pint-sized comedienne.

By two, “clumsy” had become her middle name.  Even now, as I watch her sprawl across our living room floor, I can’t believe how, for as many scrapes and bumps and bruises she has, there have been no broken bones.

Knock on wood.

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As a three-year-old, we have grown into parenting her big personality.  There is nothing meek about anything that Ellie does.  She LOVES and she’s ANGRY and she’s THRILLED and she’s BIG emotion in every moment.  Life with her is vivid and bold and full.

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We love you, Ellie Bean!  Happy fourth birthday.  I can’t wait to keep growing with you this year.

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Lesson #12: If I don’t stop blogging, I’m going to be in trouble.

This is part of the 31 for 21 Blog Challenge!

We just returned from a great weekend away.  My parents watched the girls while John and I had the chance to gallivant around our old college town, reminiscing about days on campus, sleeping in until 7 am (!), eating in nice restaurants… it was lovely.

We missed the girls.

Now we’re back and I’m supposed to help John paint our kitchen, which means that you don’t get to hear a lesson tonight.  Because really, if I don’t get my butt off the couch and pick up a paintbrush, there will be mutiny and I’ll have a half-painted kitchen for our Halloween party on Friday night.

That is all.

Three-week-old Tessa.  Too cute for words.

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Lesson #1: We ain’t slowin’ down.

I thought a lot about how I wanted to start my Blog 31 for 21 Challenge.  I have a list, you know.  Of course I do.

Instead of my awesome blog start, I got work, work, double work, paperwork, pick up kids, migraine starts, football game, potty break in locker room, drive through dinner, beer.  Pajamas, prayers, teeth brushed, stories read, lights out, Extra Strength Tylenol, crash on couch, Peppermint Patty.

I think it lends itself well to one of my first lessons after Tessa’s birth: life isn’t going to stop just because of this diagnosis.  Sure, we cram in a few therapy sessions, sometimes we get sidetracked by an illness or a doctor’s visit, and Lord knows, we are on a different pace than we may have planned, but the world has not stopped turning because of Down syndrome.

We take the kids to restaurants and ice cream parlors.  We throw them into the car for road trips and family functions.  We still work, they go to daycare.  We have our parties and bonfires and go out on dates without them so that we can complain about how crazy they make us and how much we miss them when they aren’t around.  They have sleepovers at Mimi’s house and we go to church when we can and all of the things that have always happened still happen.

Life doesn’t have to stop when Down syndrome enters.  It may adjust, but it still marches on and we can make of it whatever we choose.

Love this!  Belongs in my classroom somewhere....

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