Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Dear Baby #1 and #3

Dear Baby #1 and #3,

I must be in a weepy mood this morning.

Perhaps.

Before Ellie and before Tessa, there were you two.  For a few precious weeks, we got to daydream about life with you, to think about who you might be and how fun it would be to have you to love and care for, to watch you grow.

God kept you before we met you and while we couldn’t understand it at the time, we do now.  If we had been sent you, how vastly different might our life be.

The pain of losing you both is eased only in having the grander plan revealed as life moves forward.  It’s really hard to say that I would rather have this baby than that one, but I understand the purpose in the suffering.  I can begin to recognize how each piece is starting to come together to make a far different picture than we imagined – not just because we have Ellie and Tessa, but because we don’t have you.

Little ones, you are loved.  I expect that you are making some others very happy up in Heaven, and that we’ll get to meet you some day.  Thanks for teaching us some lessons that we very much needed.

Hugs and Kisses,

Mom

:):

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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Life, lately… June 2015

It’s been quite some time since I just posted cuteness…  so, here we go!

The girls rode in a cart together for the first time:

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My mom and Tessa are so photogenic…

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And I decided to join in the fun!

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This is our “Tiger Family.”

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Ellie got a new bike helmet so that she can ride her bike.  She insisted on wearing it around the store.

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Daddy has been practicing his hair combing skills.

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Ellie is so very excited to spend more time with her cousin this fall when my mom watches her. 🙂

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Don’t you just love gaggles of small children??

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Tessa is not impressed with most foods these days.  Who can blame her?  She just got FOUR teeth in at the same time!

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When there are a thousand boxes around the house, you have to have a little fun!

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Well, fun until it isn’t so much fun anymore…

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Tessa is getting so big!!!

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It’s been raining a TON, but we decided to brave the rain and take a little bike ride anyway!

IMG_8542These last three of Tessa are from today…  I can’t wait to print them to hang in my office.  She is so pretty!  🙂  
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Signs of Spring

We waited in a line for the car wash today that was 10 cars long.  35 minutes, sipping my decaf iced coffee, listening to Ellie chatter in the backseat about how, now that she’s three, she’s brave in the car wash.  When she was two, she tells me, it was too scary but now, well, now three means that she isn’t afraid anymore.

“Mom?  Maddie’s mom died and now she lives with God,” she tells me.  “And I’m going die too, someday.  And who else lives with God?”

I took a long sip after that question.  Seven cars in front of us still.  I guess we’re having that conversation.  Again.

Winters are harsh in Chicago.  The wind chill, the salt on the roads… But now, there is a palpable energy in the air.  SPRING.  It’s 30 degrees warmer today than we have felt in months.  There is sunshine.  There are puddles.  I’m sitting by the back door watching Ellie play outside.  She’s still wearing a coat and picking up what is left of the (filthy) snow, but when her cabin fever got to be too much, it didn’t take me 20 minutes to bundle her up enough to send her out the door.

John, too, is suddenly out of the winter funk.  As soon as he saw a 50 in the forecast, his winter doldrums switch flipped off.  He’s barely cognizant of his 30th birthday coming up in a couple of days.  He is, quite literally, ecstatic.  He’s always been this way.

I’m more cautious with my optimism than the rest of our little family.  It has been a long winter and I’m not convinced that she won’t rear her ugly head yet again.  But still, I’ll wash the road salt off the car and pack away a few of the heaviest sweaters, hopeful that we have turned the corner for good.

For what it’s worth, I’m thankful for the winter.  It makes the spring so much more special.  Such is life.

One year ago…

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This Beautiful Life

I only want to write about this one more time before I put this baby to bed.

I am approached by many people who want to know how or why I’m taking this diagnosis “so well.”

I want it to be abundantly clear that Tessa is my baby first.  Sometimes, she is my baby who slept through the night at six weeks.  Sometimes she is my baby who just loves to snuggle.  Sometimes, she is my baby who came a lot earlier than planned.  And sometimes, she is my baby with Down syndrome.

It is not wrong to feel sad, upset, angry, overwhelmed, disappointed, or hurt when you get life-altering news.  My initial reaction was confusion.  I distinctly remember laying my head against the bed, straining to hear what the nurse was saying to John while I was still delivering the placenta (sorry, male readers), and being completely bewildered.  It became very urgent for me to learn what this meant for our little girl (whom I thought was a boy, which made all of this even more perplexing).  But no one ever told me that she wouldn’t live a happy life, so why should I expect that she won’t?

Here’s the reality of Tessa’s beautiful life as I see it:  in very rare instances, a person with Down syndrome may never speak.  And so what??  Is her life not worth living if she never says a word??  How many times have words gotten me in trouble?  How often have I caused pain, hurt, anger, or frustration with my words?  And who would it really hurt if Tessa never speaks?  Me?  What do my feelings matter if my little girl is happy?  What can I really want for her?  To love and be loved.  That is all.

Sometimes, Tessa might deal with disappointment, frustration, and hurt because of her different abilities.  And so will Ellie.  Believe me, both of my children will have to overcome struggles.  If Ellie comes home and tells me that she wants to be a tennis player, I have to be honest, it will concern me a little bit.  I’ve seen her try to walk quickly across a room…. graceful she is not.  However, there’s no reason that she can’t work at it and accomplish what she wants.  That’s how I feel about Tessa.  If she wants to go to college, get married, fly to the moon, am I going to tell her no?  Hold her back?  Stop believing in her?  I have no reason to believe that she won’t be able to do any of those things.  Worse would be to tell her she can’t… or worse, to never have had her to love at all.

I accidentally stumbled into a support group online for women who had terminated their pregnancies for medical reasons.  I was looking for other mom groups for families like ours and it was literally one of those situations where I scrolled and clicked too fast, ending up clicking the link that I didn’t intend to pick.  I will not stand in judgement of these women and their decisions.  I believe that it is between them and God.  But I mourn for those little babies who will never snuggle on the couch with Daddy, who won’t get way too many kisses from their big sister, who won’t have the chance to love simply because of misunderstanding, misinformation, or a lack of confidence to be able to provide for the child.  It is a beautiful life and I am so glad that Tessa is here to enjoy it.

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