Yo soy La Lay

adventures in family, faith, and Down syndrome

Finding a place in the Land of Mom

I am slightly envious of the moms who got to mother before the Internet age. I don’t know what it was like back then, but it feels like finding a niche now must be far more complicated than it used to be.  

Did so many styles of family life exist before the Internet??  And, perhaps more importantly, are there any moms out there who don’t think about mothering much at all??  Most of the time, that’s where I am at – I mother based on instincts, not thinking much about it, doing what keeps the family moving forward.

I feel like all the moms around me have a style, but somehow, I’m lacking.  They are gentle moms or tiger moms or organic, chemical free moms, or moms that love Lysol.  Pinterest moms, soccer moms, dance moms, CEO moms, hyper-anxious moms, free-range moms, helicopter moms, non-vaxxers, bed-sharers, formula feeders, homeschoolers…. And I’m just over here trying to keep up with the laundry.

Sanity ended 4 years ago, my friends.

The world of parenting a child with special needs, and then the subset of parenting a child with Down syndrome, comes with its own little mom-cliques.  We have the supplementing moms, the inclusion army, the self-contained special Ed advocates, a whole new category of babywearing mommas, pro-therapy, anti-therapy, diet restricters, moms who still love Kraft Mac and Cheese.  There are moms who want to ‘fix’ the issues that their kiddos have and moms who want to let them be just as they are and to hell with society and their silly standards for acceptable behavior!

I have tried to figure out where my mom identity lies.  This has been rolling around in my mind because John and I attended an informational session about drug trials that are happening for medications that would improve the cognitive function of people with Down syndrome.  It was fascinating and thought-provoking and has left me quite stumped.  

If there were a pill that would help Tessa think, would I give it to her?

A mom in the group raved about the trial that her daughter was a part of.  She says that her daughter’s holistic doctor (what is that??) believes that she is on “something” and the mom has seen some big differences in her daughter’s independence.

But would I give it to Tessa?  Even if I knew it was 100% safe, do I want her to take it?  Does it change who she is?  Does it send a message to her that she needs to be somehow better than what she is?  And when does it become her choice rather than mine?

We are not on a mission to “beat the odds.”  We have never set out with the expectation that Tessa do any more than be her best self, just as we expect from Ellie.  Does medication help her do that?  Is treating her cognitive functioning level the same as someone with ADHD taking Ritalin or someone with depression taking Prozac?

Am I okay with this?  Am I a part of that group of moms?

I don’t know.  I just don’t know where I fit in.  I like real science and double-blind studies and factual information.  I like routines and structures and personal space and kindness to all.  I like knowledge and teaching my kids about all kinds of stuff.  I like to parent without thinking too terribly much about it… But this medication question has got me wondering – if it goes to market and is an option for Tessa, what kind of mom will I be?
One year ago…  

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We OWNED the J months.

No, no, that’s wrong.  TESSA owned June and July.  We just stepped back and watched her bloom.

Our old SLP (speech therapist) called it “sponging.”  I call it awesome.  I just want to list all this out, just because.  Tessa’s ‘new’ since May-ish is all of this….

1. Standing… Pulling up to her feet and loving it.  Seeking out opportunities to stand and finding it exhilarating.  She is now motivated.  I’m not sure why, but I don’t question it!

2.  Stairs… Not only can she go up them, but she goes up lightening fast.  AND, she has memorized the sound of the gate opening and as soon as she hears it, she’s off.  Next step is to teach her to get down them safely.

3.  A million tiny teeth popped out this summer.  Molars on three out of the four sides, four top teeth, still has two on the bottom… She’s almost halfway through getting baby teeth in!

4.  Straw cup, mostly checked off the list.  We still have to work on her stamina, but this is a problem solved by Mommy and Daddy being more consistent with the practice.

5.  Communication…. I feel like I need some sub-categories here.  A little personality has certainly bubbled up in Miss Tessa.  She is a little ham with people around us, waving hello and blowing kisses at anyone who catches her eye.  She also consistently waves bye.  She has some new signs (play, drink, and all done, which all look almost exactly the same, and cracker).  Today, she put two signs together (more and cracker).  We think she is saying Papa (both of her grandpas are “Papa”) and maybe Dada, though I’m not convinced on the latter.

6. “In” and “Out” – Tessa got the concept of “out” pretty quickly (meaning, she would take objects out of a box or similar vessel).  “In” was a challenge, but she is mostly on board with it now, as long as she wants to let go of the item and we give her lots of praise following. 😉  I’m sure Ellie is thankful to have a clean-up buddy, even if Tessa moves a lot slower than her sister.

7. Play… Wow, the sister interactions are SO fun to watch now!  Tessa actively seeks out opportunities to play with her sister.  She loves to chase and wrestle with her; she follows her around the house (especially in the bathroom!) and Ellie has adopted “minion speech” because she thinks that it sounds like Tessa’s words.  She sneaks around Ellie’s shoulder to watch the tablet games that Ellie plays.  Their favorite thing to do together is crawl in circles and laugh hysterically.

8.  She dances.

9. She sings and does the Itsy Bitsy Spider motions.

She’s got lots of areas to continue working on (don’t we all???), but I have to tell you that this “sponging” phase has been pretty awesome.  I just love this kid.  

  

  

  

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Team Tessa Take 2!

Events in life that really, truly merit a 3:30 AM alarm clock buzz are few and far between.  For labor, I’ll allow it.  A flight to some exotic paradise, it’s not off the table. Otherwise, 3:30 is not an hour that I have any appreciation for.

For Team Tessa, I’ll make an exception.

When we woke the girls up at that ungodly hour (which was so appropriately deemed “night time” by Ellie), they were rarin’ to go.  Bleary eyed adults piled into our van for the trek to the city, wondering what in the world we were thinking getting up so early but the girls?  The girls were ON.

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In case you can’t tell, that’s me looking exhausted, Ellie looking annoyed at another picture being taken and Tessa with her best “I’m not impressed” face.

We had an amazing team running for UPS for DownS again this year.  With the help of friends, family, coworkers and totally random, awesome people (seriously), we raised over $4,000 for the group.  It takes a lot of courage to sign up for any running event in Chicago in July and today’s heat and humidity were unrelenting.  I’m so thankful for these amazing people and their dedication to running for Tessa.

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And of course, the spectators are pretty awesome, too.

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The rock, the glue, the heart of this team, John has fought through late night and early morning runs, calf pain, exhaustion, and an irritated wife to make this happen.  His dedication to the cause, like his dedication to our girl, is unbelievable.

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Despite the 90 degree heat and 95% humidity, we had a great day!  And since I’ve been up since night time, rather than lots of words, you’ll have to settle for photo evidence…

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Electric Fingers and a call to deep kindness

Sometimes, time passes between posts and I can barely feel it.  Life heads full speed ahead and there’s no time for reflection or much thought at all really.  Writing, my vital outlet, is shoved into some back corner of my life, jammed in between long discarded hobbies like getting manicures and scrapbooking.

But on other occasions, I feel the distance between my schedule and the thoughts rolling around in my brain.  There’s an electricity in my fingers, an itch to sit in front of a screen and get the words out, but sweet time escapes me at every turn.

This is why, at 11 pm while my family is well off on their nightly journey in the Land of Nod, I’m tossing and turning.  The weeks since my last post, while not overwhelmingly interesting to any outside reader, have been powerful.  In the clearing out of our first home and subsequent return to the home of my adolescence, self-reflection has been running rampant in my brain.  Maybe it is just the big, gulping breath of the freedom of summer, maybe it is all of the transitions happening to me and around me, but I seem to be stuck on ensuring that I am being the best that I can be for my husband, my children, my family, my coworkers, my world… and a disappointing feeling that I am not sure if I have done this well in most recent times.

This morning in church, our pastor gave a phenomenal message about the spiritual importance of kindness.  While I spent so much of his sermon wrangling a squirmy and overtired 4-year-old, I desperately clung to the words he shared, feeling as if God had put me into that pew for a real reason today.  I have written much about being kind and try to live it when I can, but I wonder if I have truly accepted the call to love thy neighbor… all of thy neighbors… and to show kindness to all, even the ones who challenge me or grate on my nerves at every turn.

The greatness of God’s grace is that we can fall short in the task of caring for our fellow man and still feel His love and acceptance.  But this kind of deep kindness that has been on my mind today is the core of what I’m asking the world to do for my own child – to love her, unconditionally, without doing so out of guilt or charity.  Have I done this as often as the opportunity has arisen?  Even with those who challenge every moral fiber of my being?  And if I have not been able to do so myself, how can I ask it of anyone else? 

Deep kindness in action.  Be the hands and feet of God.  Go to it.

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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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We interrupt this regularly scheduled program…

 
😀 😀 😀

That is all. 

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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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Zoo Day, Take 2

There were three distinct differences between the zoo trip that Ellie and I took last year and ours today.

1. No more diapers.

2. No more stroller.

3. No more nap on the way home.

Because we no longer need diapers, I spent as much time checking out the potties as I did looking at animals.  Just sayin’.

We started with our usual breakfast:

During our meal, Ellie told me all about the animals that she would like to see.  We had been watching Wild Kratts in the moments before we left the house and by odd coincidence, it was all about an African Safari.  The last scene that we saw was a slide show of sorts that flashed pictures of at least half of the animals that we were going to see.  Because of this, I spent most of the morning explaining to Ellie how the zoo and Africa were two different places.   In any case, we beelined for the zebra and giraffes first, her two favorite animals.  Much to her dismay, the zebra did not pee while we were watching this year. The giraffes were so close to the fence though that the zebra was quickly forgotten.

We saw the Penguins eating their breakfast…

And, since this is the trip where we go crazy and do all the things that Daddy always says “no” to, we had our caricatures drawn by some high school kid saving money for a trip to Costa Rica.  Ellie was totally entranced by his work.

As usual, we saw the dolphin show and ate a really overpriced lunch.  We spent a good deal of time sitting by one of the fountains taking mommy/daughter selfies and debating whether the fake floating crocodile could eat the fake hippo on the other side of the pool.

We started at the zoo at 9:30 and by 1:00, I was exhausted.  Not Ellie!  Onward she lead me, to seals and rhinos and past the bears again.  We visited a little pet gift shop just because it looks like a dog house and she was desperate to go inside.  And of course, we had to cool down with some Dippin’ Dots!

Ellie took my picture outside of the Ape House:

By the end of the day, there was a lot of time spent on the trolley due to the tired legs (pros and cons to no stroller!).  Our last stop of the day was the gift shop, where she simply could not be swayed from the selection of this quality item for John:

Let me tell you, she was PUMPED to give it to him.  I gave him a heads up that he would need a good reaction prepared for this one!!  It really is cute, just not something that I’d ever pick out for the football loving, guitar playing guy’s guy that I married.  🙂  She was also desperate to give Tessa the exact same squeaky toy as she did last year, but I was able to convince her to pick out a little stuffed penguin.  Oh, to know what goes on in that kids’s head!!!!

Last year, on the way home, Ellie slept peacefully in the backseat and I had quiet time to reflect on our lovely day.  This year, she talked (and talked and talked) the whole way home about everything she saw and what she would tell her daddy about our day.  It was exhausting, but equally as lovely.  I can’t help but wonder how she be next year, as an almost five-year-old when we go again.  I don’t know if two years in a row counts as a tradition, but she is such a fun little girl… I can’t wait to go again!!

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Motivation

7:00 AM, Sunday morning

I wait.

Behind that blanket-draped gate, Tessa is babbling away, playing with some toys stolen from her sister.

I’m waiting for her to want to come to the other side.

This could take awhile.

Maybe a week ago, our physical therapist said that we were being a little too easy on Tessa.  She has encouraged us to seize the moments when she is most motivated, like when she wants to get out of bed or up into our arms.  Tessa knows that we will pick her up if she cries enough, so her motivation to develop her standing skills is kind of low.  She is a lightening fast crawler, so there is no strong urge to stand and walk and run.  After all, she can keep up with the other kids by crawling.  Yes, she is really that fast.


Yes, I do believe we will be here for awhile.

The fine line between being a kind parent and an enabler is ever-so-blurry sometimes.  At what point is she just not going to put in the effort?  At what point are we beyond a learning experience and into “well that’s just mean” territory?  And when do we just let it go in the name of our sanity?

And when we let it go, are we failing?

Special needs parenting is parenting on steroids.  These issues happen with all children, but the degree… the degree is different.

Motivation: the missing puzzle piece to solving my own impatience.  It’s a tricky one to find.

Especially when it is so hard to say no to this little face:

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Rattled.

The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace.  He doesn’t know.  He cannot know.

“We love it!” I exclaimed, probably a little too brightly.  Tessa burst into tears.  He was quite clearly baffled and muttered something about how she’ll never be….  and then he stopped.  I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand:  Why is it acceptable to put any child into a box marked undesirable?  Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life?  And why the hell does it matter if she ends up smart or high-functioning or independent??  She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues.  Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love.  My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am.  I pray that we opened his mind and heart just a little bit.  I pray that Ellie remembers her mom’s response more than his words to me.  And I pray that somehow, we have made a little tiny difference.

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