Yo soy La Lay

adventures in family, faith, and Down syndrome

In appreciation of just showing up

In my own process of navigating our Down syndrome diagnosis, I have kind of, for better or worse, made it all about me.

From the moment I learned that there were people who cried when they learned the news about Tessa, I essentially said to hell with their feelings, they don’t get to feel that way, she’s my kid.  I’m content and they had better damn well be content too.

And away we went.

I could go on for a long time about whether this was the right choice or not.  The reality is that we all get to have feelings.  And, perhaps more importantly, our feelings are our reality.  Accepting, living with, even enjoying a world with Down syndrome is challenging for some people.  It may still be a challenge for some of my closest family and friends.

This is a note of appreciation, from me to all of you.  Thank you.  Regardless of your feelings or your place in the acceptance process, you show up.  Every time.

I remember that for a couple of months, it was very jolting for me to interact with older teens and adults with Down syndrome.  I’m sure there are a lot of reasons for this… but mostly, I was afraid of acting the wrong way, of trying to be normal, but maybe coming across as not normal… Afraid of saying the wrong thing or looking the wrong way or God knows what else.

I am sure that this is a challenge that my family sometimes faces.  But it doesn’t stop them from showing up.

I had this moment of clarity and deep gratitude last Saturday morning… One Friday per month, our local group puts on a Family Friday event where kids and their siblings get to run free in a daycare facility while the parents chat.  It’s the highlight of our month. ūüėÄ  This month, John’s sister and her family were in town and we asked them to join us for Family Friday.  Without hesitation, brand new baby in tow, they were in.

There are a million great excuses that they could have used to duck out.  Instead, they ventured into our community and got a little more cozy with Down syndrome.

I cannot tell you how much it means to us when friends and family just jump on board.

There are so many other examples of this.  Team Tessa and our amazing friends who raise money for our group.  The friends and family who come and hang out in our UPS for DownS tent on race day.  The willingness to be a part of things that help us connect to a community… The acceptance of Tessa as just plain Tessa, with or without an extra chromosome.

There is no greater gift that can be given to our family than to just show up.  Thank you all for doing that, time and time again.

  

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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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Dad Sabotage

It is an annual tradition of mine to kidnap John around Father’s Day and take him (and the girls) out to the Quad Cities, where we met and attended college. ¬†He never really knows when it is coming and this year, we got him good.

We have quite a few trips coming up in September and October and, given that is it now practically August and we hadn’t gone yet, he thought it was going to be an off year. ¬†This is why, when I told him that it was time to go shampoo the carpets at our townhouse and asked him to please let me drive so that he could call his mom, he didn’t bat an eye. ¬†Then, I asked him to open the glove box for some gum and he found this:

He knew.  Inside the card, a terrible little poem that I wrote on a whim, telling him that we were off on a little journey:

It’s horribly written, I know. ¬†You can only write so well in the grocery store parking lot with a four-year-old asking 47 questions a minute in the back seat.

In any case, he was over the moon excited.  And thus, our 36-hour whirlwind trip began.

I love this.

We ate dinner in one of our favorite QCA restaurants and went swimming in the hotel pool.  Tessa loved it, Ellie was totally freaked out by the depth of the water.

After swimming, Whitey’s Ice Cream, another must-have when we visit what feels like our second home…

Where the heck is my ice cream, Dad??

¬†After ice cream, it was time to get the children in bed, so back to the hotel we went. ¬†It’s always a curious thing, finding a way to stay awake and chat as adults while sharing a hotel room with the children. ¬†This year, John tried putting on episodes of Everybody Loves Raymond, but after a couple of references to testicles and a vampire commercial, we thought maybe we should try the quiet reading time method. ¬†After about five minutes, we got a lecture from Ellie.

“Guys, no lights, no TV. ¬†It’s time for bed. ¬†Come on, let’s go, lights out.”

Alright then.

In the morning, we visited Jimmy’s Pancake House for the most delicious pancakes that we have ever eaten. ¬†We come here every time we visit the QCA and are never disappointed. ¬†This was the first time that we had brought the girls with us. ¬†Tessa was hammin’ it up with everyone around her. ¬†The waitresses all came over to say hello and at the end of the meal, our waitress asked if she could take her to meet some of the other staff. ¬†It’s a small place and we have had this waitress a few times, so since Tessa was ok with it, we let her go. ¬†She was high-fivin’ everyone she met! ¬†Hilarious. ¬†I asked Ellie (who was just a little bummed that she didn’t get paraded around) if she thought Tessa was being a ham and she said “No, she’s not a ham. ¬†She’s a lover. ¬†She just loves everyone!!”

Also, I’m not sure if you knew this or not, but if your kids are starving, jelly packets make a great appetizer. ¬†Just FYI.

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No visit to the Quad Cities is complete without a visit to the Family Museum… as long as the kids are with us, that is. ¬†ūüôā ¬†It’s one of the best children’s museums that we have visited, mostly because it’s small enough to let the kids do their thing and they can actually interact with all of the exhibits without being overrun by 50,000 people.

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They have added a really neat area that is designed for crawlers and new walkers. ¬†Tessa loved it and got a lot of PT practice that I’m sure her therapists would appreciate. ¬†Personally, I appreciated the time to just sit and watch her safely crawl around and explore.

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The real reason that we love the Quad Cities is our emotional tie to Augustana. ¬†It’s a small school – and graduates of Augie are sickeningly devoted to our alma mater. ¬†We can’t help it, it’s just a lovely place to be.

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We also visited the John Deere Tractor Museum…

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And then Ellie let us know that it was time to go home.

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See you next time, Quad Cities. ¬†We can’t wait to come back!

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