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Ellie turns five

by Maggie

My favorite four-year-old is now five.

Truly, this year with her has been one of my favorites. She has always, always been an accidental comedienne, and as she grows, the punch lines just keep on coming.

There was a time last year when I thought maybe she was going to be more introverted. She was suddenly very fearful of others outside of her immediate circle. She preferred to play more on her own, and when we laughed at her Ellie-isms, she would get upset or cry.

She doesn’t always understand why we are laughing now, but her concern about our response has faded significantly. She loves knock-knock jokes and silly voices and playing pretend.

She asks a lot of big, grown-up questions these days, like “Mom, what’s sacrifice?” and “What’s your soul?” The other day, she wanted an explanation of puberty.

That was fun.

Still, as surprising as it might be, she is a rule-follower. She does not like to disappoint people. I remember this year when she was very sick and missed a week of school. The night before she was going back, she told me that she was worried that her class would be mad at her because she had been absent.

She is so much of John and so much of me that it is impossible to separate what she gets from which parent. She loves limits, but loves to push them. She cares deeply about people and loves to be with others, but needs urging to feel comfortable reaching out to new faces. She seeks the thrill of risks, but waits for a detailed explanation of how it will work and then a guiding hand to make sure that she is OK the first time. She is firmly planted with one foot in the familiar and one foot Beyond at all times.

This year, she will go to Kindergarten and branch out to a whole new set of people and experiences. I’m nostalgic today, but equally excited to watch this little one bloom in a rich learning environment, as she has sought out information and facts and ideas since she was much, much smaller. Every night, my prayer is that she continue to love the way she loves and continue to learn the ways she learns – and then that she use her talents for good.

The sheer terror of letting her loose in a great big world is inexplicable. However, the joy of watching her grow is even greater.

We love you, Ellie Bean!! Happy fifth birthday!!

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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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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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WDSD 2016

by Maggie

Happy World Down Syndrome Day!

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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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Oh mama

by Maggie

Oh mama, you’ve been thrown in the deep end now. You, with that new little baby nestled in your arms, that little button nose popping out from that flat little bridge, you don’t know what just happened to your world. It feels broken, I know.

You aren’t going to believe a word I tell you now, but that little fact never seems to stop us mommas anyway. We’re firmly planted in the After. You will get there. I swear you will.

You can’t believe this has happened in your life, but it has.

You don’t understand how no one knew before… All those ultrasounds… No one knew.

No one knew.

You don’t feel equipped to do this. You tell yourself that this isn’t the life you wanted and you don’t know how you are going to manage.

You will manage… more than manage! You already are. And you will look back and believe me someday.

There will be changes, yes. Detours in the path. New lingo to learn. There is time, so much time. Your life is moving forward, beautifully. It’s too much now, but I assure you, it is beautiful.

There will be days when you will yearn to be treated like every other mom. You will shout from the rooftops that you are “more alike than different!!” You will balk at the notion that you walk a separate journey. You will be fierce.

There will be days when just looking at families outside of this circle will make you sad. Maybe even angry. Your heart will beg for someone, anyone, to acknowledge that this shit is harder than people can possibly understand. It’s nothing like what any of those ‘normal’ families deal with. You will be annoyed.

You own these feelings, mama. They are yours and they are right and you are just perfect. Your child is perfect. You have a new journey, and it will be hers and yours together for awhile, but then just hers and you… you will cheer from the sidelines.

You can, mama. I swear, you can. You will. And so will she.

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Ellie turns five

Treetop Love

Control Freak

The Tortoise and the Hare

The Flood

Quiet

WDSD 2016

Home.

State of Our Union, February 2016.

Oh mama

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