Yo soy La Lay

adventures in family, faith, and Down syndrome

Nine

Our sweet little sunshine baby is nine today.  We have had NINE years of loving this most precious gift of a human.

Usually, the week leading up to Tessa’s birthday has me on an emotional rollercoaster. This year? No different. 😅 I like to blame it on the joyful chaos of the holiday season coupled with the ample opportunities that December provides to reflect on memories of the past. Probably a lot of it is just stress. 😬

A few weeks ago, we were sitting in a restaurant and I was telling John about a friend of a friend who just had a baby with Down syndrome. To our surprise, Tessa chimed in, “I have Down syndrome too!” She beamed. I was floored. I had never heard her speak those words or acknowledge her diagnosis in any way. It’s not like we have hidden this fact from her – quite the opposite actually. We never sat down and had “a talk” about it, but it comes up in conversation in the home on occasion (less frequently now than before). I just never realized that she was taking it in…

My own lesson in presuming competence.

As Tessa creeps closer to pre-teen years, she is delightfully enamored by the concept of romance. She loves to hear about why John and I love each other and demands that we kiss each other “on da wips” before I leave for work in the morning. When she plays, she makes up stories about boyfriends and princes and weddings in far-off places. We are buckling up for a wild ride.

She is our little introvert, often seeking the quiet comfort of her favorite spaces with people that she loves dearly.  She’s content to be on her own, reasonably happy when Lauren plays with her, and over the moon with joy when Ellie joins the fun.  She loves her people fiercely.  We love her that way, too.

Still our food fanatic, Tessa loves nothing more than to go to a restaurant for a cheeseburger and fries. She takes one bite of the burger, then requests a to-go box so that she can eat her meal at the kitchen table when we get home. She loves vanilla ice cream and Little Debbie Christmas Trees, pasta “wif dust” (parmesan cheese) and chocolate frosted donuts. She’s learned to read the buttons on the fridge so that she can make her own cups of ice water. We’ve learned to put all leftovers in the cabinets so they don’t become her 5 AM snack.

She calls Dad her “Big Man John” and I’m called by my first name rather than Mom. Her imaginary friends Evie, Anastasia, Rosita, and Kate come along with us for every adventure. She loves a good snuggle in the morning, a trip to Target in the afternoon, and all the episodes of Bluey in between. She prefers to wear dresses and big comfy t-shirts that she can pull over her knees while she sits on the floor. I want to bottle up every bit of her and store it away for a rainy day.

We adore every little nook and cranny of who she is.

Happiest of happy birthdays to you, sweet Tessa Lynn! WE LOVE YOU!

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Eight

Every morning, sometime before sunrise, Tessa comes quietly into my room and rests her head on my stomach. “Mom?” she asks, “are we gonna stay home today?”

If the answer is yes, she’s excited. She asks for donuts, then curls up in a little ball in the space between me and the edge of the bed. She tells me a joke, usually about a chicken crossing the road, and then drifts back to sleep.

If the answer is no, it’s also received with excitement. She runs through the family list… “Are you gonna go to school? Is Daddy goin’ to school? Is Wauren? An’ Ewwie too?” and when she is satisfied that we’re all following the routine, she bounds off to find herself a big comfy dress for school and a morning TV show. She puts on her own clothes and shoes, and helps herself to whatever food she can easily reach in the kitchen.

At eight, Tessa is sweet and mostly shy, but a social butterfly at restaurants where she can greet each table with a wave and a booty shake. She loves her Barbies and Disney movies, cheese sticks, vanilla ice cream, pasta, hamburgers with pickles and ketchup, oversized t-shirts that she can stretch over her knees, listening to music, swimming in the tub, and practicing swear words with Lauren while they are tucked away in their bedroom together.

She doesn’t like to transition to school, but loves it once she is there. She adores her teachers and classmates, and they think she’s pretty awesome too. She processes her feelings by talking to her imaginary hand buddies, still hates when we sing happy birthday, and plans to be a queen when she grows up. We think she’ll make a good one. 😉

The other day, Tessa was home from school with a fever and just she and I got to spend our day together. We watched a movie that she picked, and then when I asked her what to put on next, she said, “weww, how ’bout we watch one of your favorites, Mom?!” She takes such good care of the people she loves.

Our sunshine girl is eight now, and we still can’t believe she’s ours. Our greatest adventure has been the most unexpected blessing that we never knew we needed. Happy, happy birthday to our sweet Tessa Lynn! We love you!

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Seven (yes, I said seven)

Most nights when I come up to bed, I know I’ll find her there, nestled under the covers of my bed, fast asleep. Sometimes her Barbies are scattered on either side of her, and other days it is Lauren who has found her way to Tessa’s side. We go through the same routine each time. I chuckle and sigh, often snap a picture, and go collect John so that he can move her back to her bed. She is now too heavy for me to carry from room to room.

Some nights I go up early to study, just after they have been put to bed. While I work, I hear them giggle in their room down the hall. Usually at least once or twice, they run into my room, see me sitting there, say something like, “oopsies” (or maybe other times “God bless it” or the family favorite, “oh shit” 😬), and run away laughing. When Lauren’s chatter dies down, Tessa quietly makes her way back to my room and snuggles up next to me. I let her stay. It’s nice to have the company. And since she’s soon to be seven, I know the days of this are numbered.

Seven, yes, she’s turning seven.  Or has turned, depending on when I actually hit publish on this.  This child:

is now this child:

and it is 10,000% as unbelievable to me as it seems to you.

I got a little carried away with the birthday hoopla this year, which of course is something for which John teases me to no end. He asks, “feeling guilty about the day she was born again?” I marvel then at how far we have come since our little unicorn baby came into our family.

She is seven.

She is hysterical. She is shy and sweet and also very blunt. If she doesn’t like something, she tells you. She will not have her shows interrupted by anything or anyone. When dinner is served at the table (a rare occurrence these days), she pulls a blanket out of the basket in the living room and makes herself a spot to eat in front of the television. She finds great joy in hitting “leave meeting” on the Zoom calls with her teachers.

(As a side note, it is equal parts amazing and horrifying how well she has learned to navigate virtual learning platforms.)

Dogs are not her favorite, but she loves Uncle Matt’s pet lizard Chomp. 

She adores her sisters and her cousins, especially Baby Luke. She’s not a fan of large groups, but will talk your ear off one-to-one. Her raggedy dolls from the Target dollar spot and naked Barbies are her favorite. Each one has a name and a personality, and for hours and hours a day, they keep her brain going. She doesn’t mind when Ellie asks her to play the male lead character from any movie while they play, but given the chance to be Elsa, or Anastasia, or Cinderella, she runs with it. She loves to dance and sing. She absolutely requires that I give John a hug and kiss “on da wips” before I leave for work in the morning.

I do believe that I am her favorite. I think there are more than a few people who could say that though… because when you have her attention, that’s really how Tessa makes you feel – like there is no one else that she loves more than you (again, as long as you aren’t interrupting the tv show).

I would choose this life with her a hundred million times over. Happy birthday, Tessa Lynn. We love you!

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Ellie turns nine

The thing about Nine is that it feels like “childhood” is fading into the dark, like the last little rays of sunshine are dipping low into the water at sunset, soon to be gone.

That’s a rather melancholy analogy. Enough of that nonsense.

(It does feel like that though.)

Our Ellie Bean is now nine and a force to be reckoned with, there’s no doubt about that. She’s brilliant. She’s mercurial. She loves big, feels big, dreams bigs, plans big.

I think I maybe wrote that same sentence when she was four, five, six, seven, and eight.

We have learned so much about this sweet girl as she has grown into herself. We used to think of her as a little comic. She was (and is) hilarious. Don’t you dare laugh though – when it’s not a joke (which is always), she doesn’t appreciate not being taken seriously. And Lord help anyone who gets in her way when she’s got any kind of plan up her sleeve. This will serve her well as she grows.

(It is not really serving me well, per say, but eyes on the prize.)

She has a gorgeous singing voice and loves to cook. She’s been known to take time on the weekend to do a self-directed research project or two. Her Spanish is beautiful and she is way better at math than her dad. She tells us sometimes that she wants to be a teacher when she’s older, but when I tried to get her most recent vision for adulthood, she said it “isn’t time to talk about that right now.”

At nine, she’s 100 feet tall and totally adored by her sisters. She’s every bit the tornado that earned her the nickname. She is never seen without a book or something to write on. She packs a backpack full of supplies for every car trip, even when we’re just going to Target. Once John told her it wasn’t fun to read at a holiday celebration and she reminded him that “we all have different kinds of fun.”

You do you, Tornado Ellie. You are rockin’ it. Happy Ninth Birthday! 🌪❤️

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Lauren La Loca, Age 3

When the grandkids are being particularly energetic (read: unruly), my mom sends them outside to run laps around the house. She’s been doing this since I was a kid (I definitely ran a few laps in my day 😬), as a way to tire the children and probably to give herself a mental break.

Lauren has been desperately awaiting her birthday for one reason: when she’s three, she finally gets the chance to run with the kids. Her first words this morning after bursting out of her room at 5:23 AM were, “I’m fwee, and now I getta run!!!”

Something tells me that this is a foreshadowing of the adventures to come with this child….

When she was born, we wondered if Lauren would ever get lost in the shuffle of life with three kids. Her sisters have some big personalities to contend with, after all.

Not a chance.

The child has no fear.

Well, that’s probably a little exaggeration. She has some fears. Two, actually.

Bergens:

And bugs.

She’s also been known to ask John to “vacuum the scurls (squirrels) into little pieces” when they get too close to the house.

She talks loud, acts big, loves to make people laugh, pushes the limits, spends a significant amount of time in time-out.

Her favorite things to carry around the house are her Frozen blanket (stolen from Ellie), her Daniel Tiger pillow (stolen from Tessa), her two Uneecorns (at least one stolen from an older sibling) and her puppy.

She climbs things that she shouldn’t, and jumps off things that she shouldn’t, and is naked approximately 73% of the time.

Also, it should be noted that she is OBSESSED with John.

Literally obsessed. 😂

(Note: he loves this and is also totally exhausted by it.)

Happy third birthday to the crazy beautiful little girl. We are so happy that God sent you to us, and are also thankful that you were the third or we may not have had any other kiddos. 🤣 You are exactly what this family needed, and you have brought so much joy to our days.

We love you, Lauren Ann!! ❤️

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A Facebook Memory

I haven’t written in ages, yes I know. Let’s get that out of the way first. Hi, I’m here.

I’m here because Facebook reminded me that six years ago, this little girl got very very sick.

My memory of that day is vivid, far more so than the day she was born, or any other day for that matter. It’s funny how the mind works like that – like how some really big scary days get blocked out, and some others are hazy, but some are clear as day.

Sitting on the couch with her, watching her gray little face trying to gather any energy to take a bottle.

The nurse insisting that the pulse ox machine probably was broken because 77 doesn’t seem believable and rushing to get another. And Dr. Nash coming in to tell us that he had called 911.

The paramedics loading her and I onto the stretcher, holding a little oxygen mask to her face, while Ellie danced and sang and played with the firemen in the hallway.

People watching as we were wheeled out of the office and out the door. It was a beautiful, sunny day. The grass was really green.

In the emergency room, when John and Ellie arrived, and Ellie looked up at me and Tessa in the bed, and suddenly it struck me – Ellie had pink eye.

When they transferred us to our preferred hospital, I rode in the front of the ambulance, and sat in awe watching the cars that completely ignored the lights and sirens blaring, not moving out of the way for my little baby.

The respiratory specialists who met us at the ambulance and hooked her up to the little isolette. The woman had gone to church with me when I was younger. I don’t think she recognized me.

I remember walking through the underbelly of the hospital – gray concrete walls, bland beige hallways, and then to the PICU.

The smell…. does anyone who has ever spent time in a NICU or PICU ever not have a visceral reaction to that smell? The soap, the cleaners…

The constant beeping.

These things haven’t left my mind.

The common cold had caused a pneumonia so severe, a lung so saturated, that the doctors couldn’t hear it on their stethoscopes. Seven days later, we brought her home. We don’t talk about what could have happened if we didn’t have an appointment that day. There are some places that the mind just shouldn’t go. Instead, we count our blessing every day with this little girl. God let us keep her. Six years later, we are so grateful for that.

❤️

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Welcome 2020

It’s time to start a year fresh. Last year, I documented almost nothing in written word. It was just that kind of year – the word I focused on last year was “go,” and boy, did we ever! We committed to experiences, not things, and as I created our family photo album for 2019, I am calling it a win. We did all the things. It was great. I wrote none of it down, but yes, it was great.

This year, we build. That’s the word I chose – build. I have a few things in mind – some actual physical structures, others not. One very specific piece of building that I want to do is right here in this space, stockpiling the words and memories of our life in a way that I just didn’t do last year.

Onward.

Our cast of characters:

John: Age at this writing, 34. “Rebuilding” his fantasy football team, exploring other mid-thirties life changes (suddenly a bourbon connoisseur, what??), managing the household much better than I at this time.

Ellie: Age at this writing, 8.5. Really desperately wants to be a teenager; loves scrunchies and nail polish. Reads and writes all the time. Self-described “emotional” person (we concur).

Tessa: Age at this writing, 6. Obsessed with movies and Pete the Cat. Hates dogs. Eats “airplane” oatmeal for breakfast. Loves to play pretend with her figurines.

Lauren: Age at this writing, 2.5. A beast. John’s shadow. Does what she wants. Eats what she wants. Tells you exactly how she feels and what she’s going to do about it.

Me: Age at this writing, 34. Busy. Blonde again. Still with a serious travel bug. Completely engrossed in the chaos of wife-ing and mom-ing and administrator-ing and friend-ing and all the other -ings.

Let’s get building…..

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Six

Let me tell you a little something about this sweet face: behind those precious features is the mind of a very determined little girl.

Every morning when I leave for work, she stands in my way until I have hugged and kissed each member of our family goodbye (generally twice). Her favorite part is when I kiss Daddy, so that she can exclaim, “ewww, that’s disgusting.”

And every afternoon when I see her after school, she has prepared a mental list of which movies we will watch that night. Now, we generally don’t watch TV during the week, but I’m telling you, this child is persistent.

Occasionally, ok maybe sometimes… ok fine often, she gets her Beauty and the Beast. Or Anastasia. Or Shrek. Or whatever.

It’s fine.

She’s a bit grumpy in the morning and loves a good bear hug to get her day going. She’s a little particular about what she’ll wear – it’s not a sensory thing or anything like that, she just wants to make sure her t-shirt and underwear have the right picture on it to capture her interests for the day. Most days, the underwear must feature a Disney Princess or forget it.

She still can’t help herself from exclaiming “Jesus Christ, what the hell?!” when she’s annoyed or mad. She loves to shrug her shoulders to say “I don’t know.” Sometimes, she’s starting to blurt things out in Spanish and when she does, it knocks me off my feet a little bit.

She could absolutely live on chicken patties, cheese sticks, and pretzels.

Our little sunshine girl is growing into a great big kid. She’s often a little more soft spoken, but kind hearted and thoughtful with her peers. Her teacher says she has the best manners, even when she’s running gleefully across the outside field away from the line that she is supposed to be in. She apologizes when she’s made us sad and just can’t pull herself away from comforting anyone who is looking a little forlorn.

She’s a trouble maker with her sister. Lord, are they trouble.

Six brings a new world to us – elementary school: reading logs, school lunch, math… she’s loving it. We’re loving it. We’ve watched her blossom bit by bit this year and can’t believe that this little baby, who caused such a massive overhaul in our hearts about everything we “knew” to be true, has started to stretch her wings. She’s warming up to fly along in the world and she is so happy. We are so happy.

Happy sixth birthday, sweet Tessa Lynn! We love you so much!

❤️

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The Eve of Six

On the eve of her 6th birthday, I’m stuck thinking about the night Before. It was sort of a shit show (much like tonight was). Just before Christmas, on the eve of final exams, I rushed out of school, picked up Ellie from Miss Julie, and made the long trek to drop her off with my mom so that John and I could go to my 37 week appointment together. There was a lot of traffic, and I distinctly remember being frustrated at how the world seemed to be at a standstill while I was very much in a rush to get where I needed to be. Ellie sat buckled in her little car seat, paging through the book A Charlie Brown Christmas, we had the tunes going, and I was freaking tired.

At the time, my doctor’s office was going through a transition from paper records to computer and it created these exceptionally long waiting times. There were appointments where we had to wait over an hour to be seen – and this night was no different. John and I sat, hungry and tired, in the waiting room together, and tried to sort out our gift plans for Ellie. We just wanted to move the appointment along so that we could get to our dinner. When we finally got to see the doctor, I asked her if there was any sign that I might get to have this baby before January 1, and she laughed and said no, everything seems to be just where it should be, and that I should mentally prepare myself to wait for my January due date.

So then I drowned my sorrows in a giant plate of nachos with extra jalapeños and about 13 hours later, we had a brand new baby in our arms.

Funny how that works out.

Ooooh, the waiting. The waiting, the waiting. I hate it and love it in the same breath. I want to see the future, and want to hold on tight to the now… and let’s not even talk about the nostalgia that I have for this squishy little face:

Six tomorrow. SIX.

So much waiting has just flown by in the blink of an eye.

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Ellie turns 8

Every birthday for these love bugs feels like too much, but Eight feels like closing a chapter and opening a brand new one.

I bought Ellie books for her present. BOOKS!!!! Not toys! Do you know what this means? I’ll tell you what it means. It means my little girl is really becoming a big girl.

To be honest, I am kind of enjoying this big girl.

At eight, Ellie is tall. Let’s just start there. She’s a beautiful little girl who loves dresses and sandals. She spends hours outside coasting around on her scooter on the driveway or reading books on the patio. She thinks of herself as a “junior adult” and delights in any opportunity to move closer to her ideal age (which, if you are wondering, is 19). Recently, she told me that she is ready to start using adult toothpaste.

We have a rule in the summer that kids stay in bed until their clock says 7:00. At 6:07 AM today, Ellie burst out of her room in her pink party dress. She got a look from John, but told him, “it’s MY birthday, so I decided to come out early.” And that’s Ellie. She’s smart, that one. She’s a rule follower, but also not concerned about making her own when she feels it is appropriate to do so.

She desperately wants her fairy garden to attract a real fairy, but is teetering on the edge of understanding that the fairy will never come.

She is, by her own description, emotional. Just as she has been since she was a child, she feels things BIG. We’ve called her “Tornado Ellie” for quite some time, not because she is wild and destructive, but because of how she can whip up, push through, and move on before you can catch a breath. Then you’re left wondering what the heck just happened.

She’s covered in scraped knees and scratches from her adventures in the yard. Once I got a call from the nurse that she managed to fall and knee herself in the nose. 🤦‍♀️ But goodness is she graceful when she twirls around on stage in her ballet costume.

She does not like sushi.

She has a life plan that involves going to college where John and I did, studying “biology and all the biggest hardest words in Spanish so I can say everything I want.” She thinks she would like to be a teacher because she is “already working on teaching Tessa.”

I just want to bottle up all of who she is and keep it on a shelf to show her when she is older. It’s not that I’m sad to see her grow. I’m not – I love it. I love to see each stage. But it’s hard to know you can’t go back. Back to this….

Or this…

Or this….

Our precious girl is eight today, and we are so grateful for every nook and cranny of who she is. We love you so much, Ellie Bean!!

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