Down Syndrome | Yo soy La Lay

Little tiny boxes, big fat dreams

by Maggie

When we bought this seemingly giant townhouse, we couldn’t imagine how we would ever fill it.

We lived on hand-me-downs, quite literally, for quite some time. A futon that dipped in the middle almost to the floor, a loud floral print sectional sofa draped with bed sheets to tone it down… a mishmash of his life and mine and everyone else’s came together to make Home.

New things trickled in. We bought a cheap kitchen table that we wouldn’t use consistently during mealtime for well over a year. A shiny new stand mixer as a wedding gift, a bedroom set, a new sofa. There was a wine rack purchased from our elderly neighbors on a whim, holding fancy wine given to us by dear friends as a wedding gift, and more barware than any other home I’ve ever visited.

Wardrobes purchased, wardrobes replaced… Elastic waistband maternity clothes lined the master closet, then drawers full of little tiny onesies in pink and purple and sparkly loveliness.

Piles and piles of books fill shelf upon shelf. From infant swing to exersaucer, pink plastic Big Wheel traded for a Disney Princess big girl bike, there are toys in every single room. Camping gear and Christmas decorations are stacked up high in the garage. Furniture for one child doubled, but try as we might, we couldn’t stretch the space.

All of the things are slowly making their way into little tiny boxes, ready for The Big Move.

Can I just say…. there is so much HAPPY here.

The tiniest little corner of my heart worries that we will jinx it, moving out of these lovely little cramped quarters. But the dreams… the big, fat, hazy dreams… they keep us packing.

This little love makes it worth every piece of bubble wrap and packing tape. She is the one teaching us what dreams are all about.

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18 months

by Maggie

Ok, that’s enough cranky already. Yes, The Big Move is daunting. Yes, spring time has brought mass chaos. Yes, my patience has been tried beyond its usual limits. But let’s be realistic. We’ve made so much progress that really, amidst all the chaos, there is still so much joy.

I don’t even remember the last time I shared a family update. As this outlet is generally meant to be that – a place for updates – I’ve certainly dropped the ball. So here you have it:

John and I are making our way, slowly but surely, to the end of another school year. We both took on leadership roles in our buildings this year and while challenging and new and definitely an adjustment for me, the year has been revitalizing. And we had a really great time together at a family wedding recently!

However, we are rather boring.

The children though… oh, the children. They are, as I tell anyone who asks, wild and crazy.

Seemingly overnight, Ellie went from scribbling haphazardly all over coloring books to this:

Mike Wazowski from Monster’s Inc, drawn from memory

Our family (there was “no room” for Daddy)

A tree (clearly, I hope)I hear that those are pretty good for a three-and-a-half year old (though she is now getting much closer to FOUR than I care to admit). We have some artists in our family (especially my mother in law) so I’m sure that she could have some artistic talent. I’m not sending these off to the Louvre quite yet, but hey, if the kid can draw, that’d be pretty cool.

Ellie was also in the wedding that I mentioned above. She was the ~~sweetest~~ cutest little flower girl. Did she fall asleep in the salon chair? Yes, she did. Did she cry going down the aisle? Yes, she did. But did she look lovely during the whole shebang? Yes, quite lovely.

Tessa, while still very much a baby in a lot of ways, has catapulted herself toward toddlerhood.

We recently had some tests done on her eyesight and hearing, both of which have come back without concern. While her SLP (speech therapist) was concerned that she might not be hearing everything that she should, we know that she has an ear tube that is working its way out of her ear (as they usually do after 12-18 months) and it is partially blocking some of her hearing in one ear.

Tessa loves (LOVES.) to babble. Usually, her intonation makes it sound like she is speaking in long sentences of gibberish. There is a lot of emotion in her statements. We get a good laugh out of the angry Tessa, as we are quite sure that if she had words, they would be quite unkind when she’s upset. We have been working more on signing with her. Ellie loves signing and always asks how to say various words in sign. Tessa has just a couple signs – more, eat, daddy, and play (what more do you really need??). We are working on bedtime, please, thank you, drink, potty, Mommy, Ellie (we use the sign for E, but shake it like play), shoes, and of course, NO!!!

Very often, I have moments where I think “wow, she is absolutely nothing like an 18-month-old.” And then sometimes, she does things like this…..

…. and I’m reminded how she’s not entirely different from her typical peers. That cabinet had been closed, by the way.

Tessa crawls like a champ. MAN is she fast!! One of her favorite things to do is to hold a block or other object in her hand and race across our new laminate floors. She LOVES the loud bang bang bang of her little hands as she moves. We are working on getting her to bear weight on her feet. She fights it most of the time, but today, when John was giving Ellie her bath, Tessa was so desperate to see what was happening in the tub that she pulled herself right up to her feet. SO exciting!!! We have her wearing a SPIO suit on a fairly regular basis (supposed to be every day… realistically, it’s like 2-3 days a week) to give her more body awareness and support.

What I love the most about her right now is the budding personality. So far, Tessa is a little shy, but sweet as pie. She just loves to smile and laugh. While she is usually contended to roam around the house exploring, nothing makes her happier than to have the full attention of one of us or, most especially, her sister.

Did I mention that she gives kisses now? Or that she got her first haircut? Or that she can eat real table food? And she kind of drinks from a straw?? Have I shared that we finally moved up to 12 month clothes? Or that turning the pages on books makes her squeal with delight?

We’ve been busy.

In two weeks, school will be out for the summer… ok, three if you count my extended days. I can promise more updating as we take our deep summer breath. Get excited. Summer is going to be here before we know it!

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peace and quiet

by Maggie

So I’m sitting in a Target parking lot, feet up on the dashboard, windows open, stuffing my face with a spicy tuna roll.

(Sorry I ate sushi without you, Johnny.)

If you don’t believe me check out this visual proof. Please note the “artistic value in my shot (read: it’s totally staged and I looked really silly taking it).

I’m picking up my kids from their sitter in ten minutes and we are heading into a jam-packed weekend of wedding and baptisms and family (oh my!). I will tell you, though I’m sure you can already tell, that life has been a little overwhelming in our household lately. This little pause in my day, one tiny second to breathe in quiet and breathe out stress… It’s vital.

I’ll be 100% honest, I have hit a parenting wall in the past month or so. My frustration with my communication barrier with Tessa is brimming. My frustration with my soon-to-be four-year-old’s “selective hearing” is beyond overflowing. I need just one of them to make some progress.

Or maybe it’s me who needs to make the progress.

Probably, it’s me.

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Definition #3

by Maggie

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…

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

family

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The Talk

by Maggie

We had to have The Talk with Ellie. We weren’t ready for it, but suddenly, in the middle of a quiet car ride home, she blurted out the question we’d all been waiting for… Sort of.

“Hey guys? Why do you all think you hafta give Tessa Down syndrome? She’s FINE!”

99% of the time, Ellie picks up on every. single. thing. that is said in her presence. This is not very convenient, believe me. She has asked about adult conversations from the radio, commercials for random products (you need to buy Oxiclean, Mom!). gossip that I’ve discussed in the company of dear friends… she is always listening. Because of this, it has been very odd to us that, up until now, she has denied ever even hearing the words “Down syndrome.” Occasionally, we have asked her if she knows that Tessa has it or what it might mean, but she would always furrow her little brow and give us a look like we were crazy.

I don’t know what set the wheels in motion in her head that night, but the floodgates opened. We talked about Tessa’s 47 strings and how the rest of us only have 46 (thank you, Becky Carey!). We talked about how she needed a little extra help from her therapists, but that yes, she is fine. We assured her that Tessa would always have Down syndrome and that was OK. It was the most random, meaningful, (un?)important 10 minutes that we have had with Ellie in her not-quite-four years.

And then she followed up by asking us when we were going to stop to get her Happy Meal because she had been waiting long enough.

Love this kid.

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On trusting one’s intuition

by Maggie

Sometimes, I’m really good at listening to my intuition as a parent.

And sometimes, there are moments like last night.

I should have heeded our sitter’s warning when I picked up the children. I always love the moment when I arrive to get the girls after a long day of work. All of the kids come wobbling toward me, a little bit like Children of the Corn, babbling some nonsense about their day, all at once, none of it the least bit coherent. “They are wound up today!” she tells me.

I got this, I think to myself, with no concern over my impending night of single parenting. Ellie had been asking us to order pizza all week. I’d pop in a movie, call up Vita Bella, and put the girls in bed a little earlier than usual. No problem.

In this moment, I made my first fatal mistake: when Ellie wouldn’t put her shoes on and I was anxious to get home, I told her that I had “secret, fun plans” for us.

Through a series of unfortunate events, mostly due to the fact that Ellie had given up on her burning desire to eat pizza and still wanted “secret, fun plans,” (which I didn’t actually have), we ended up at Red Robin. I knew it was a bad idea. Every little voice in my head screamed “No! Not tonight!” and I ignored them.

If you aren’t familiar with Red Robin, it’s a hamburger joint that has generally been a really family-friendly environment (read: it’s incredibly loud). Recently, our Red Robin has gone through a little remodel… they now have three “unofficial” sections: the adult (bar) section, the section for Parents Who Have It Together, and the Frazzled Parents and Loud Parties section. There is a glass wall that separates the latter two sections, most certainly so that the Parents Who Have It Together can enjoy the show on the other side of the wall. I’ll let you guess where they sat us last night.

Frazzled Parents, unite!!

In the instant that we sat down, Tessa decided that she was starving. We have entered a phase of life where she can’t well communicate her needs, so there is a lot of growling. Yes, growling. Loud and forceful growling.

Three seconds later, Ellie told me that she needed to go to the bathroom. Now I, as a parent with great foresight, knew that Ellie loves to check out public bathrooms and not actually pee, so I made her go before we left the house. So, when she asked, I calmly told her that she would have to wait until we got home, feeling confident that she had just emptied her bladder.

Even after three portions of dinner and several soft pretzel bites (which I later found stockpiled in her cheeks and the roof of her mouth), Tessa continued to be starving. She had had enough of the crummy, unsupportive high chair. Ellie’s crayons were dropping all over the floor. There was a lot of ketchup everywhere.

Before I knew it, Ellie was standing on her chair, announcing to me (and what felt like everyone in a five-table radius) that she needed to go the potty right now or the poop was going to come out of her butt.

I really need to listen to my intuition more often.

Our rockin’ night wrapped up soon after we go home… a lot sooner than Ellie would normally go to bed, in fact. Later, I dozed off on the couch, only to be awoken by chubby little fingers poking at my cheeks and nose. Tessa had been sitting on my lap, drinking her last bottle of the night, and was looking for more. She smiled up at me with those little crinkly eyes and for just a moment, the events of the Great Red Robin Fiasco were a distant memory.

I can’t wait for tonight’s round two adventure….

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Pass the fluff, please

by Maggie

What I really need right now is a goofy little novel to read, a chick-flick-in-print, if you will. A little Meg Ryan, a little Hugh Grant… nothing too heavy, no drama, no political nonsense, just some fluff to breeze on through. Please, nothing thought-provoking and heaven forbid it be the least bit relevant or timely. No thanks. Not now.

Before the children, I gobbled up books on my Spring Break. In the summer time, I would go through stacks and stacks. Back then, I thought it was important to buy all the books that I read. John and I would spend hours at Barnes and Noble on a Tuesday afternoon, each emerging from our own favorite area of the store with a pile of books under arm. We’d talk briefly about what we found, both feigning interest in the others’ selections, without any actual intention of reading them.

(The library gets a lot more of my business these days. I’m the patron who uses up all her renewals and then ends up with a $2.00 fine because even after 6 weeks, I’m not done and to be honest, the book is lost somewhere at bottom of my diaper bag anyway. But I digress…)

When Ellie was born, I took up crossword puzzles. Baby Brain had taken its toll on me somethin’ fierce and I thought that maybe if the crosswords worked well for senior citizens, then they might help me stay sharp also. Each night before bed, I set out to solve the puzzles in the Easy section of my books. I don’t know how well they work for memory in the over-65 crowd, but I can tell you that my brain still requires a lot of post-it notes to function properly.

Then of course, After, the bookshelf was filled with books about Down syndrome. It is fascinating and enriching and important, but sometimes, I get so saturated with Down syndrome and non-fiction and and life that I just need to take a step back.

Our Spring Break was full. So full. We are prepping the house for the big move. I painted a lot. John put down a floor. We had the help of our tremendous family. On the eve of a Monday back to work, I’m reeling a little bit – I’m not quite sure what happened or how it happened or when our actual ‘break’ might take place. And this is why I just want light, fluffy, nonsense. And maybe a glass of wine. Please and thanks.

(Cuteness in photos coming soon…)

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Mom Kryptonite

by Maggie

I will just put this out there: I find it completely impossible to be an effective parent while wearing skinny jeans.

I don’t know, it might be just me, but hey, God has blessed me with a curvy figure, so those skinny little leg holes don’t have quite enough room to fit my calves (and let’s not even talk about the lack of support for my hips and leftover baby belly). Sometimes, I get a little brave and throw them on when I’m hanging out with my kids. It always seems to be on a day when I’m going somewhere in public and inevitably, as soon as I’m dressed, Ellie’s hands suddenly seem to be coated with a thin layer of butter and everything she touches falls to the ground.

Is it really possible to bend over and pick anything up gracefully while wearing skinny jeans??

I share this because when I put on the skinny jeans, it’s like kryptonite for my mom-ness (surely not a word, but yeah.) and while sometimes that’s ok, I feel like being a mom is so ingrained in me right now that losing any of the Mom Super Powers gets me totally off-kilter.

Case in point: Last weekend, John and I hit the city with some childless friends of ours. The girls were with my mom and dad over night, we were staying downtown… I decided to rock the skinny jeans. And high heels.

Please understand that, for my entire life, I’ve been an early-to-bed, early-to-rise kind of girl. This extends far beyond the years that I have had babies, but at least before the children, 10 pm didn’t seem like the middle of the night. On this particular evening, we had dinner reservations at 8:00 (gulp.) and then tickets to a comedy show at 10:30 (people actually go out of their homes that late at night??). “Have fun!” they said. “You need to get out and live it up!” they said.

In my fresh, hip, and completely impractical outfit, hot dang, I was invincible. Don’t get me wrong, I had a blast. We had great conversation, I got to drink a glass of wine uninterrupted (but only one because Good Lord, I can buy two bottles at Meijer for that price) and have adult conversations… It was fabulous. So fabulous that we decided to keep the evening going until the wee hours of the morning. Irresponsible, but fabulous.

One week later, I am still tired.

And those jeans? They have been banished to the back of my closet, hidden under a pile of more reasonable boot-cuts, until my next temporary lapse in sanity.

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World Down Syndrome Day – A day in the life

by Maggie

Last year at this time, with my just-barely three-month-old nestled in little bouncy seat beside me, I sat down to write about life with a little one with Down syndrome in celebration of World Down Syndrome Day. For as much as the children have grown in the past year, so little has changed.

I’ll be honest, this post about what life is like with a child with Down syndrome seems a little silly to me. I’ve been working on it for a week now, trying to find some spin, something interesting or relevant. Maybe it’s because she’s young, maybe it’s just because things aren’t really that different… we love our life and wouldn’t change a single, solitary aspect of it, but let’s be honest, it’s not exactly thrilling.

Our mornings still start early… I’m out the door by 5:40. We can usually hear Tessa starting to stir on the monitor by then, but we let her stay in bed until John is ready to let the chaos begin. We have also found that Ellie is a lot happier with life when she is woken up by Tessa’s babble rather than Daddy’s insistence that she get moving. On the weekends, we have breakfast together. Sundays, I make pancakes. Otherwise, Ellie mooches John’s oatmeal.

During the day, my kids go to our daycare provider while John and I work. Tessa has great motivation to keep up with the kids around her; she so loves (and is loved by) the other children. A couple of her therapists do her sessions there, otherwise she has them after I get done with school for the day at our house.

I pick the girls up in the afternoon and at home, Ellie watches The Pioneer Woman (every.day.) while Tessa plays and I finish up my work and check in with the mom groups that I am a part of through social media.

(I used to be pretty active in typical “mom” groups. As of late, that has become… challenging.)

99% of the time, the girls get along great. Just recently, we’re starting to witness the usual sibling annoyances:

Around 4:30, Tessa makes her way to the garage door, where she sits and signs “Dad” until he walks in the door. We sit and eat dinner as a family every night. Ellie is the slowest eater on the planet. After dinner, there is almost always some kind of dancing.

Occasionally, we get the girls into the bath. We pretend to fight over who gets to put Ellie to bed while the other feeds Tessa and wrangles her into her pajamas. By 7:30, both girls are asleep, I’m mostly asleep, and John’s enjoying his quiet time on the couch.

I would not change a thing.

Every 24 hour period is a blessing. Every second that we get to spend loving each other is precious. Our family’s minutes and hours are not much different than yours. I hope you can see that, feel that, believe that… and include others with Down syndrome in your life right along side us and our little girl.

For more stories, visit adayinthelifewithdownsyndrome.com.

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3 Decades

by Maggie

A very special kind of countdown has started and I’m super excited about it!

(No, Mom and Mom-in-Law, I’m not pregnant.)

Today, I am celebrating the beginning of my 144-day “make fun of John because he is 30” extravaganza. I only get 144 days because of course, then I will be 30 also. But for now…. let the fun begin. 🙂

As I’m sitting here, he is telling me that he does not want a post in celebration of his birthday… which is fine, because this isn’t about that…. it’s just about him. I have done exactly what he told me. 😉

I had to laugh today, going through old pictures of him, because I was trying to find just one to share here in celebration of him. it’s impossible. I don’t know if there is just one picture that can really embody his accomplishments, his determination to provide for his family, his devotion to us and to the girls and to God. This is a remarkable man. And for all of the amazing things that he has worked so hard to provide for us, these are the things that I love the most: