Down Syndrome | Yo soy La Lay

Incomprehensible

by Maggie

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song. I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory. Like for many around me, it is hard to digest all that has happened this week. I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.

We have so much.

I did not wake to the news of Dallas this morning. Before the national news, another devastating headline about a former student crossed my feed. He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures. I don’t know that either can help a person gain perspective or bring warring sides together. But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.

He had been through so much. Made so many bad choices. An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now. We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement. Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can. I pray and try to be kind and gentle. I don’t know what else to do. I don’t know what words to say. I don’t know how to stop the hurt.

This morning, Tessa sang me a song. Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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The Walker

by Maggie

Ok, let me level with you here.

This is Tessa’s walker.

I hate it.

We have actually had it in our home for quite some time. It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation. I struggle quite deeply with the fact that her disability is worn on her face. I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome. When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now. So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent. So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time. When Tessa’s therapists came, they suggested a session in the park a short walk from our house. So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually. She made it.

It’s not about me. It’s not about the people who gawk as they drive by us peddling on down the road. It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

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Treetop Love

by Maggie

Some of my most favorite places in my Rolodex of memories are high up in the trees. I have always loved the birds-eye view, the ability to just look out on the world and soak it all in. As a child, I remember sitting at my upstairs bedroom window, which faced the street, and watching the teenagers walk home from our local high school, which was about 50 yards from our home. I loved to examine their fashion, listen to their words… It intrigued me.

In the back yard, there was a crab apple tree with the perfect little notch for sitting with a book to read. My brother and his friends preferred the big maple tree for climbing high, high toward the sky, but not I. My love of looking out at the world has some limits – like a thick, strong window or the need to feel like even if I fell out, I wouldn’t die.

In high school, there was the hotel at Monte Verde in Costa Rica. When most of my friends took the zip lining tour, I preferred to walk the bridges high up in the treetops, looking out on the lush forest below.

The fifth floor of the library at Augustana, my little dorm room high up in Andreen, looking out into the treetops, so many memories of the calm that comes from looking out into a beautiful green landscape.

I tell you this now because we are home and it is lovely and there are trees – so many trees. I mean, these are the views from our bedroom windows.

In the morning, before the chaos of the day begins, this is my first view of the world:

The flood of memories and peace it brings to me, to feel that I am waking up in a secluded retreat every morning… it’s one of my most favorite parts about Home.

Stay tuned for more Home, coming up in the next few weeks. ❤️

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Control Freak

by Maggie

If our children always did what their parents wanted, we certainly would not have Chicken Baby in our home. If you haven’t met Chicken Baby, here he (it?) is:

I am uncertain who thought it would be a great, marketable idea to put a Cabbage Patch doll into a chicken costume, but there he is. And he’s aaalllllll ours!! (And by ours, I mean Tessa’s.)
Who would choose this creepy little creature as a comfort object??

We acquired Chicken Baby on one of our nine bagillion trips to Target in the last three weeks (because new house, of course). If children always did what their parents wanted, Tessa would have behaved herself on that trip, and we never would have ended up in the toy aisle, searching desperately for a soothing object that cost five dollars or less. An entire rack of cute stuffed animals were lined up in front of us and we got Chicken Baby.

I didn’t go into parenthood with many preconceived ideas of who my children would be. I assumed that we would get some extroverts, because we are. I assumed they would excel in school. I knew, before parenthood, that I could keep my girls from having a princess complex. No pink frills, no referring to the girls as princesses.

Last week at preschool graduation, Ellie was the only girl in the class who said that she wants to be “a princess” when she grows up.

So there’s that.

One of the most difficult parts of parenting for me is letting go of my desire to control the choices that my children make. They are young – we are not grappling with major life decisions here, but sometimes John lets Ellie pick out her own outfit and it makes me twitch just a little.

Or when she refuses to dress her Barbies and I continually have to encounter Awkward Barbie Moments…

(This is tame.)

It takes every fiber of my being to Let. Go. on a regular basis. It’s Type A parenting, desperately hoping to be just a little Type B, for the good of their development as independent women.

I think having Tessa has pushed me, just a little, to embrace the path that my child will follow, whatever that may be.

(OK, not whatever. Bank robbery and juvenile delinquency are off the table. As are jobs at establishments where women wear spandex shorts and push up bras.)

In any case, my own personal preference for matching clothes and markers with their caps on correct color probably seem like small potatoes, but I’m trying to use these situations as practice for the Big Ones, like choices about college and living arrangements and buying ridiculously overpriced clothing because it’s on fleek or whatever the new phrase for “cool” is at the time.

I feel as though they are going to give me lots of practice this summer. And I need it.

Because seriously, the markers.

(Somewhere across town, my mom is laughing quietly to herself, smiling and saying ‘hehehe, now she knows what I went through raising her…’ I have an insane amount of respect for that woman.)

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Wait for it, wait for it…

by Maggie

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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The Tortoise and the Hare

by Maggie

Ellie is life in the fast lane. Full on Autobahn, blink-and-you’ll-miss-it, one-stage-to-the-next kind of crazy. She resisted some milestones, sure. She waited to walk until the day before returning to daycare at 14 months. She waited to potty train until the day before returning to daycare at just-over-three. But there has been no down time, no pause. One day, she babbled, the next, full sentences. Seemingly overnight, she started reading. We do not teach her these things, she is just a sponge, eager to fill with knowledge. She learns independent of us. We are just along for the ride through her life, holding onto the “oh shit” bar as she careens through each stage.

Tessa is the scenic route. She is meandering through the hills and valleys, pausing to smell the wildflowers, nice and easy down the road. We stop and look at the map frequently, making sure we stay on the course. She gives us time to enjoy each phase. She moves independently of us and the norms that others would deem appropriate. We are along for the ride with her, too, basking in the sunlight in the backseat while she takes her own route.

Occasionally, my mind drifts to what a third child in our family could be like. Don’t get your hopes up, there are no plans right now. (We don’t seem to make plans anymore, as we know full well that our plans are small and God’s are greater). I cannot wrap my head around a third – we have a tortoise and a hare, what next? It’s just funny to ponder.

Free and easy down the road we go. Kind of fast, kind of slow, but onward. Always onward.

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The Flood

by Maggie

It’s coming….

Can you sense it?

I can. I can smell it in the air, I can feel it in my bones…

It’s writing season.

We’re baaaaaack!

When the air gets warm and energy goes up, when summer sneaks closer and closer, when time grows just a little more plentiful, my thoughts get antsy.

Writing season.

I’m an early morning writer, usually. My favorite time to put pen to paper (or fingers to keyboard) is about 5:30 AM. In the dark of the winter, it’s cold and burrowy weather and though my brain is awake at that early hour, my body digs in under the covers. But the birds are chirping their good mornings again. And my commute to work at 5:45 is suddenly looking a little brighter. Around me, the countdown to the end of the school year has begun.
It’s time. The flood is coming. The words, the thoughts, the memories waiting in the back corners are bursting their way out.

It’s so good to be back.

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Quiet

by Maggie

I have thirty minutes of complete and utter solitude right now.

This. Never. Happens.

I’m sitting in a rocker, in the sunlight, drinking a beer and listening to the sounds of birds and cars and the tick tick of the cuckoo clock across the room. It is lovely.

(Of course, never mind that I gave up alcohol for Lent and it is Holy Week, which I am sure makes it worse. Ellie tells me that God forgives and I believe her.)

Soon the children will be home and I’ll hear the stories of their day at Oma’s house. We will be filled up with Ellie’s laughter and Tessa’s insistence for cookies (more cookies!!) and John’s chatter about his day. It will be a different kind of wonderful.

But for now, this.

Quiet.

Calm.

Breathe.

Lovely.

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Home.

by Maggie

Everything we do is an adventure.

The adventure of our new forever home is short and wild and sort of overwhelming, but in a good way. It’s all good.

About a week ago, we decided to start looking for a home casually. This is the last time I am moving (I swear) and we want to do this right. We feel a strong need to find the right place. I have been scouring Zillow for months, waiting and waiting for the right home to come up.

It’s been rough. Our list is short, but crucial. Must have two full baths and a main-floor potty. Must have a basement for severe weather. Must have a yard that can be fenced. No well water.

Do you know how hard it is to find houses with two full baths in our area??

On a whim Saturday, we visited an open house. We wanted to get a feel for what 1,400 square feet might feel like. It sounded small, smaller than our last town home, but the layout in our last home was as open as open can be. I didn’t want to go down that road again either.

After 5 minutes in the house, we both knew it was “the one.” That night, we joked about putting in an offer. We both sort of agreed that it was crazy because we hadn’t seen anything else and who does that??

Well, we do.

By Monday night, especially when we heard another offer was coming in, I was pretty much desperate to make this home ours. Quite hesitantly (because “people just don’t do this, Mag!”), John called in a offer. He was not happy with me, but I’m a girl who knows what I like.

We got into a double-bidding situation. After a meeting with our realtor, we had to put in our highest and best offer for the home. As I grew more and more anxious, I decided to write a letter to the sellers to ask them (or beg them, really) to choose us.

(This has been edited for location privacy)

Dear Sellers,

We are writing to ask you to give us the privilege of purchasing your home. Our family is very early in our search. In fact, yours is the first and only home that we have visited. However, last Saturday, when we came to your Open House, we knew right away that your home is the perfect fit for our family. It is exactly what we need and want for our forever home.

We have been prayerfully waiting for the right home to be available in this neighborhood. As a child, I attended ______ and when our youngest daughter was born with special needs two years ago, we knew that we would be moving back from _______ so that she could attend _____ as well. The school is well-equipped for her needs. We sold our previous house and have been living with my parents while we wait for the right place and the right timing.

Our four-year-old is very excited about the backyard and that we may be able to plant some vegetables in the summer. We envision cook-outs and family gatherings on the brick patio. The location is perfect – we frequently visit _______ and their proximity to the home cannot be topped. We are in love with the kitchen space. I am not always excited about doing dishes, but when I think about doing them by that window in the kitchen while the kids play outside, it’s much more bearable. 🙂 My mother-in-law visits regularly to help us care for the girls and I know that she will appreciate her own bedroom space on the main level, rather than sleeping on an air mattress in the girls’ room. My husband has been mapping out plans for the basement “man cave” and I would love to use the other first-floor bedroom as a sensory play room for our youngest daughter.

We are ready to settle into our forever home. We can tell by the care that has been put into your home that you have kept it well and that it has been loved by your family. We love it too, and would be proud to make it our own.

Many thanks for your consideration,

John, Maggie, Ellie, and Tessa

Long story short, after a nerve-wracking two-and-a-half hour wait, we received word that we had won the bidding war. Even though our bid was slightly under that of the other party, our letter convinced the owners that we were the right family. We are over the moon with excitement. It has been a whirlwind week, but finally, finally, we are going home.

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State of Our Union, February 2016.

by Maggie

It’s time for a good, old-fashioned State of Our Union update.

My lack of writing hasn’t been for lack of topic, or even lack of energy. Quite frankly, I have lots of ideas rolling around in my head, ready to shake out on the computer page. What I haven’t found is an environment in which I can feel settled in and focused on the words. This is just my general state right now – a lot of things in a lot of places (including my own brain) and a routine that is somehow not routine at all.

It’s weird.

We sold our town home in December and are looking forward to purchasing a new home in the Spring, when it is a little greener and a lot warmer. Still in the midst of Crabuary, John and I are both busy with the odd, mid-year craziness. For me, I’m in the phase of my year that is still this year, but kind of next year all at the same time. We talk a lot about events in the here and now, like parent conferences and grades and institute days, but also about next year. Next year’s schedule, next year’s group of students, next year’s curriculum.

See? No settled, no focus. I’m like one of those frustrating novels that keeps flipping back and forth between time frames.

Those make me nuts.

Ellie’s big “news” is that she is officially a reader. This is something that she is super excited about. She loves books, always has, and so now that she can start to go through them on her own, she’s thrilled. Last night, I came home with some kind of cold virus. She plopped me on the couch, covered me with a blanket, and sat down with Are You My Mother? . She read me the whole thing, cover to cover. It took her an exceptionally long time, but she stuck to it. So cool!!

We’re getting ready to enroll her in Kindergarten next year. Like most parents, I’m not sure how we got to this point already. The district that we are in right now offers a Dual Language Spanish program at one of the schools and we are fairly certain that this is the program that we will send Ellie to. She would start with 80% of her day in Spanish, gradually moving toward a 50/50 English/Spanish split. We toured the school recently and I feel pretty confident that it is the right fit for her. We were also very pleasantly surprised that the principal made a point to tell us that they are “fully inclusive,” so sending Tessa in a few years is not off the table.

Please let that sink in for a few moments. Tessa. Learning SPANISH.

There is no “no.” There is only “how can we make this work?”

Speaking of Little Miss… we have an annual review coming up on Monday. She is on a roll these days! No, no walking yet. No, I’m still not stressed about it. When she gets too heavy to carry, we’ll have another conversation. Right now, her words and her play skills are totally blossoming. We are still using sign quite a bit, but she is picking up on words and phrases left and right. The very latest is that she says “Cheese!” when you hold the iPhone camera up to her face. It kills me. SO cute.

Her interactive play has also grown extensively. Simple tasks like rolling a ball back and forth or playing peek-a-boo took a little extra time, but we are SO there. She’s gotten quite good at distraction. When I come home from work, my mom always has a good story about how Tessa has used her charm to get out of therapy or even worse, to get out of trouble! In public places, she is a total ham with other adults. This is something she has done for a little while now, but boy, oh boy does she love to wave and blow kisses at all the passersby.

Suffice to say, we’re rolling along now. Good things are on the horizon, but good things are happening now, too. It may feel unsettled, yes, but good.

I haven’t had the opportunity to sync my latest pictures recently. We’re over on Instagram now, participating in the #365ofDisability. If you want to join us, we are @yosoylalay . Lots of cuteness going on over there. 🙂

Happy almost-Valentine’s Day!

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Incomprehensible

The Walker

Treetop Love

Control Freak

Wait for it, wait for it…

The Tortoise and the Hare

The Flood

Quiet

Home.

State of Our Union, February 2016.

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