Yo soy La Lay

adventures in family, faith, and Down syndrome

A No Laughing Matter

Have you missed us??

We are back – and tonight, bringing an important public service announcement.

Let’s start with this: I laugh loudly, and a lot.  It’s genetic, really.

It’s unfortunate that with her extra chromosomal material, Tessa didn’t pick up that loud laugh… It would be built-in therapy.

We’ve brought this up before, how Tessa bursts into tears at the sound of adult laughter.  It’s been on my mind recently because we have a family trip to Kentucky coming up and like I said, the laughing loud thing?  It’s genetic.

It’s kind of a troubling issue you see, because we are all laughers and boy, does a crying child dampen the mood.

Now that I have tripled my commute time each day, I have lots of time to think.  Nothing particularly earth shattering has come out of this deep thought, believe me.  Mostly I just wrestle with whether I should stop to quench my undying sweet tooth after a long day at work (hellooooo Oreo Coolata).  But I digress.  I’ve actually been thinking some about the laughing.  I’m not Tessa’s therapist, but I know my girl, and I want to share some ways that you, dear family and friends, can help us help Tessa.

1. Tessa is learning to live in a world where there are adults who laugh and screaming toddlers and the whole gamut of unsettling noises.  Do not censor yourself.  We need her to learn to deal with her emotions.  She will, in time.  The last thing anyone wants is to see all the fun go down the toilet!

Remember this?  

2.  It really helps if, after you laugh, you avoid eye contact. You may think I’m crazy, but how many time have you seen a kid fall down and not actually cry until an adult gives that ‘look’?

3.  Never, ever (EVER) feel bad about her crying when you laugh. It’s not you, it’s her. And that’s ok. It’s ok for her to have this issue and it’s ok for you to laugh. And to be honest, when you feel bad, we feel bad and uncomfortable and it just makes everything feel a lot worse than it needs to. So even if you do feel bad, just pretend that you don’t.

4. Did I mention the “no eye contact” thing?  It seems to help with #3.

5. Know that as her parents, John and I have got this.  Sometimes people like to help by making suggestions, or trying to problem solve, or commiserating, but it can be exhausting.  Between her therapists and our support groups, we’ve got the tools that we need to help her process.  We need time, and we need people to know that if she needs a break, trust us, we’re on it. 

So, to recap, your job is to laugh.  Please, please, laugh.  We’ve got this.

Maybe these will bring some chuckles?

  

  
  
  

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Lesson #27: Great nurses rock our world.

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU.  They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient.  Theresa was outgoing and athletic.  Tessa has been our little scooter/swimmer/mover since long before she was born.  These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding 

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Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home.  I told her about our family and Ellie’s crazy antics.  She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two.  She encouraged me to take breaks to enjoy my older daughter.  At times, there may have been a few tears, but goodness, did we laugh!!  On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down.  We got a lot of “looks.”

Totally worth it.

She was exactly what I needed.  Theresa loved my little girl immediately.  She forced no unsettling stereotypes on us.  She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged.  We all cried.

Home at last…

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Jan was a different kind of perfect nurse.

In April, I was frustrated.  Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful.  😉

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When Jan was assigned to Tessa, I was a little worried.  She was no-nonsense.  She was pushy.  She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity.  There was no woe-is-me.  We were to get the baby well and get on it with.  Jan was caring and compassionate, but she was on a mission to get our girl discharged.  And so we did.

Freedom!!

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We are so fortunate to have been under the care of these amazing women.  While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

 

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Giggles

Okay, okay, okay.  For heaven’s sake, enough with the Debbie Downer posts.

I mean, seriously.

Can I share some good?

First, this kid is potty trained:

photo (11)Why she wouldn’t smile, I’m not quite sure.  I just decided to join in with her.  And the cat face?  We went to a “Fall Festival” fundraiser for Down syndrome awareness,,, we aren’t really cat people, but Ellie likes to be different.

Anyway…. the potty training… it’s done.  They do it when they are ready, ya’ll.

Also, this kid laughs:

IMG_6178I cannot even begin to tell you what joy filled us to hear her laugh for the first time.  It caught us totally off-guard and it was AHmazing.  I have replayed the moment in my head a thousand times, hoping that the sound and the feeling never leaves my memory.  In the following video, you can kind of hear it.  Unfortunately, pretty much the only thing that makes her giggle (for now) is an obnoxious, fake laugh from John.  It’s a little tricky to hear her, but still worth the view, because her smile alone is rockin’:

Tessa is still rolling all over, pushing up on her arms and now gets to her knees pretty often, too.  She can’t really pull her belly up off the floor, but she is engaging her hands a lot more.  We have set a very loose goal of sitting by Columbus Day, crawling by Christmas, remembering, though, that she will do it all in her own time.  She is loving food of all kinds. We have yet to find a puree that she doesn’t like (of course, we haven’t ventured into the meat variety yet… eew).  She is “talking” up a storm, finally mastering a “buh” sound and sometimes a “duh.”  As her core gets stronger, she will be able to laugh more and make louder sounds.  She spends a lot of time folded in half, chewing on her toes, like lots of kids do.  She is infamous for getting stuck underneath the furniture.  We think teeth may be coming soon, as she is drooling up a storm and chewing on everything that she can get into her mouth.  Still, she is an awesome, easygoing, happy little baby.

And now, cuteness:

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You gotta laugh

Tessa has a onesie that says “50% Mom + 50% Dad = 100% ME!”

John says, “I think we need to change this to say “50% Mom + 51% Dad… actually, I should probably hope the extra chromosome came from you…”

Love this guy!

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