Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready to write 

The only way that I can really describe our last two weeks is that we are careening wildly into October.  Think big minivan speeding around the corner, precariously tipped on the two side wheels, while the driver wills the giant piece of machinery to correct itself before it tips.

Yup.

One sick parent, one messy house, two worn out kids, work chaos, meeting chaos, life chaos.  Someone send over some chocolate.  And wine.  Or maybe it’s more time to break out the tequila!!

But what else is new?

Saturday begins Down Syndrome Awareness Month.  While the rest of the world goes pink for Breast Cancer, we’ll sport our blue and yellow instead.  If you’ve been around for a little while, you know that in October, I participate in the 31 for 21 Blog Challenge.  For the past two years, I wrote a post every day in October.  This year, I’m taking part again.

In year one, we wrote about 31 things that we learned since we had Tessa.  In year two, it was 31 ways to advocate.  For year three, I’ll be writing 31 open letters to people who have somehow impacted our life since December of 2013.  I’ve been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign, in which parents are sharing letters that they have written to the individuals who delivered the initial diagnosis of Down syndrome.  I’ll be posting one of those as well, along with 30 other letters throughout the month.

I am going to miss someone.  I know I will, it’s inevitable and I apologize in advance, whoever you are.  Honestly, with this focus, forgetting someone is my biggest fear because I don’t want to hurt any feelings.  But this is where my heart is calling me this month.  I hope you’ll join us.

Who’s ready for October??

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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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Definition #3

 We re-did our little “office” nook in preparation for The Big Move.  It’s got a cute little bookshelf and cute little chair and it’s incredibly cozy.  While it is not ideal for blocking out the noises of the chaos in our home, it is a partial escape.  I’m still tuned in to what everyone is up to, but I just put my feet up and listen.

I find myself trying to spend a lot of time up here these days.

Somewhere in the mix of this…

and this…


 and this…

and this…

 
there needs to be peace.  
It is hard to come by right now.

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November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club.  He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG     Tessa loves to play “sooooo big!” IMG_6706.JPG   We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG   Sticking out our tongues in solidarity with Tessa 🙂 IMG_6766.JPG   So serious today…  IMG_6762.JPG   A little happier in this one.  🙂 IMG_6734.JPG   The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG   We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG   Holding her own bottle is super hard work!! IMG_6776.JPG  Sister love. ❤

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The S*** Show

John says I shouldn’t swear on this blog. I’m not sure why… I’m not one to curse much in life anyway, but really, this week has earned a few choice words. I think you all understand if I call it sh***y, right? That’s a good compromise. 😉

We had a particularly unpleasant night with Ellie; one that involved a LOT of crying and smacks in the nose (from her to us!!) to avoid drops. We think they were accidental smacks… But she might have us all fooled.

Today I returned to work. We have been staying with my parents, as they live two minutes from Tessa’s hospital and we live 45 minutes away. So my usual 15-minute commute would instead be an hour. I was up, showered, ready. John wandered in with a scowl on his face.

Me: Rough night, man. Those drops are brutal.
Him: Yeah. Look at my eyes.
Me: You look exhausted! It’s only 5:30, go back to sleep!
Him: Maggie! Look. At. My. Eyes.
Me: S***.

Pink.

Cross another person off the list of helpers.

You know that feeling when someone sneezes on you and every tickle in your throat becomes an “oh my God, this is it, I’m getting the bug!” reaction? That has been me. All. Day. My eyes, which are white as white can be, albeit a little dry from the hospital air, literally tingle. It’s coming for me…

At least Tessa has had a good day. We’ve been lowered to a high-flow cannula rather than the Bubble CPAP. She took four ounces in a bottle and had a nice little bath. I’m here with her now, though I’m not touching her for fear of spreading The Disease. She is a sweet little peanut!!

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Well that escalated quickly…

I love my Sunday night wind-down. The evening before the work week begins is so sacred to me that I refuse to make Sunday evening plans. Ever.

(So I guess if you have invited me to do something on a Sunday and I have declined, you now know it was for my own selfish reasons.)

Daycare bag packing. Water bottle finding. Sunday night dinner at the table together, usually take-out. Gathering up a few things to come to school with me… are my pants wrinkle free? Nope, better hang them up… Girls in bed, Ellie’s MeReader telling them a story that I can hear on the monitor… Then checking in on Facebook or Pinterest while drifting off to sleep… This is my ritual. It’s my peace before the crazy rush of a Monday. But not tonight.

Tessa has a cold, again. This one is worse than the others have been, complete with her first fever. The cough is kind of brutal, but it’s productive and I’ve had the distinct joy of pulling globs of nastiness out of her mouth for the past couple of days. She’s asleep in her car seat in her little corner of our closet now.

About three hours ago, we were driving home from a day with my family. John was talking about catching up on the DVR and I was telling him that I was looking forward to some quiet time on my long-neglected Pinterest boards. When we walked in the door, suddenly there was a crying, hangry (love that new word!) toddler with no interest in eating anything but milk. Then the other one is crying, but can’t eat without gagging on the bottle. My mom is calling to tell us that she has a fever also and then we’re trying to put the girls to bed and Tessa needs Tylenol, but it’s expired and then I’m at CVS to buy meds, but I’m stuck behind a crazy coupon lady with fourteen boxes of band aids. Back at home, Ellie is screaming about the unfairness of her bedtime and Tessa is throwing up on my shoulder and John and I are wondering how the heck our Sunday has turned into a tornado of chaos.

It is the kind of evening that makes me happy to go to work on Monday… even knowing that all day, I’ll be thinking about my little sickie.

How many days until Summer??

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