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. ūüėČ  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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Flirting with 30

“Aug 4 BLT” I jotted in the margins of my notebook today, a reminder of an upcoming meeting for me to attend.  

I audibly gasped upon reviewing my note.

By then, I will be 30.

My coworkers teased me for being such a young’in.  And really, there is nothing remarkable at all about completing my third decade.  I’m sort of bracing myself to wake up with a head full of gray hairs and some wrinkles near my eyes, maybe a sore back or creaky knees, knowing full well that the effect of that single day passing will actually be minimal.  Maybe I’ll feel wiser or seasoned or oddly at ease with the word “thirty.”

I am not where I thought that I would be.

I am precisely where I hoped I would be.

Ten years ago, this is not at all how I pictured life at the end of my twenties.

I would not change a thing.

(Well, except for maybe the baby weight.  That I could do without.)

I am prepared to go confidently in the way of my dreams and those of my family.  I am wholly open to the possibilities that are before me now or may be in the coming months.  I am at peace.  What more could I ask for?

  

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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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