Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Jefe

Dear Jefe,

Well, this isn’t exactly what we had planned, is it?

Can you even imagine what the two of us would have done if we had seen our life at 31 when we were just college babies?  My goodness, we have come a long way.

It was always my intention to write this letter right away, and I’ve been starting it over and over for like 20 days now.  It’s just time.  So here goes:

I love that you were so jumbled up when Tessa first joined us.  I think it shows how much you really care about your children and their lives.

I love that you let her beat up on your treasured Taylor guitar.  It makes her so happy.

I love that you worry so much about Ellie finding her own way.  And when I tell Ellie that her college is already picked out, you are right there telling her that she can pick whatever school she wants… and also reminding me that maybe Tessa will be the one to go there instead.

I love that you still try to make sports be a bonding thing with the girls, even though after 5 years, Ellie still doesn’t even understand that the Cubs and the Bears play different sports.  She’s got a lot of me in her.  There’s still hope for converting Tessa.

I love that you will do “mom” things.  I want you to remember that you did say that you want to do PTO.  Just putting that out there.  On the internet.  So that we all know you said it.

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I love all the ways that you help me and our families.  I love that you do the tables at family parties and that you help me put the dang Christmas tree up when you would rather be doing 87 other things and that you bring me fresh ice water at night and all the other things.

And, because it’s 31 for 21, allow me to say this:  I love your advocacy.  I love your willingness to understand Tessa’s needs and to fight for her rights.  I know for certain that NO adult believes in her the way that you do.  I love that you are raising her to be as kind, polite, respectful, and helpful as we expect Ellie to be.  Thanks for the reminder that Tessa is so ready to have time outs and to use her words.

You are absolutely the best father that these girls could have.  And on top of that, you’re a rockin’ husband as well.  And while this letter isn’t nearly as witty or thought-provoking as I would have liked, thanks for being the kind of man who will love it anyway.

I am so thankful that you picked me and I, you.

Love,

Mags

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Dear Nieces and Nephews

To my darling nieces and nephews,

I really love being a mom… and probably equally as much, I love being your aunt!! ¬†It makes me so happy to¬†watch you all play and learn and grow. ¬†This weekend, I got to see¬†all eight of you and boy, it was so much fun!!

You are all so different and that is fun to watch. ¬†You all love to play the things that are most exciting¬†for you… and as I watched this weekend, I saw that you each play in your own special way. ¬†Some of you are bossy, some of you are not. ¬†Maybe you are quiet or silly or sweet or grumbly. ¬†One or two of you like¬†to play one-on-one, where you are alone with an adult or just one cousin. ¬†Some others like to put on a show for everyone. ¬†I know that some of you are starting to notice that Tessa is a little different than everyone, too. ¬†She has some different things that she uses, like her leg braces or her walker. ¬†Sometimes she says a lot of words to you but you can’t understand what she says. ¬†Or she uses her hands for sign language.

All of you are growing fast fast fast, even Tessa. ¬†It’s hard for her to walk or talk like you big kids, so I know you sometimes forget that she is not a baby.¬† I love when she plays with you!¬† I hope that when she sees you run, she’ll want to run too! ¬†She learns a lot by watching what you do. ¬†That doesn’t mean that you always have to be on your best behavior when you are around her (but you do have to be on your best behavior because your parents say so).

If you have questions about the things that she does, you can always ask me or Uncle Johnny. ¬†What is most important is that you just keep playing with her like all the other kids. ¬†She is a tough little girl, just like the rest of you, and she just wants to do the things that you do… it just takes her a little longer to learn how.

Love you guys!

Auntie Mags

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This is part of the 31 for 21 Blog Challenge ‚Äď blogging every day for the the 31 days of Down Syndrome Awareness month. ¬†To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

 

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Dear Mom

 Dear Mom,

I’m not always sure that I can do this right, truth be told.  In my hardest days, I wonder too much if I’m making the right choices for both of these girls.

You believe in me.

Moments into our new reality, you were there, rooting for Tessa and us and the choices that we would make.  When the nurses told me that you had come, thinking that you would just be bringing John a sandwich and hunkering down to wait for Grandbaby #4, there was not a single hesitation in my mind about letting you into our odd little vortex right from the beginning.

When we asked you if we could move in with you and Dad so that we could provide a great educational experience for our children, you didn’t bat an eye.  You both took us in, with all of our mess and chaos and annoying habits.  You care for my girls, help Tessa with her therapies, and love fiercely on Ellie so that she never feels forgotten.

You learn with us and we are so thankful for that.  So many families don’t have the support that we have.  You are teaching others how to see our child as we see her, as just one of the members of the goofy little grandbaby clan.  You read books, you attend seminars and watch webinars.  You’re giving up an entire Saturday to attend a conference so that you, along with us, can help us provide Tessa with all that she needs to live her dreams.

Much earlier this year, your health concern rocked me.  My mind went wild, as all of ours did, and for days and days, I would spend my commute fighting back tears of worry that I would have to face all of the things, good and bad, without you.  I am so very thankful that you are here and that all is well.  I am thankful that my little ones have lots more chances for sleepovers and Mimi and Ellie Days and baking cookies and reading books… that they will get to feel all of the love that I have felt as your daughter for so many years.

I love you!!

Mags

PS – Good Lord, will there be a letter this month that I can get through without crying???  I’m not off to such a good start!

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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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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Incomprehensible

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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Treetop Love

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. ‚̧ԳŹ

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The Flood

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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Home.

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 ‚Äď 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‚Äôs much more bearable. ūüôā 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‚Äô room. My husband has been mapping out plans for the basement ‚Äúman cave‚ÄĚ 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.

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. ¬†ūüôā

Happy almost-Valentine’s Day!

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Two

Two is such a sweet little word.  Two.  Just say it out loud.  Come on, do it.  Seriously.

It makes me smile, and so does this beautiful face:

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And so, now she is two and we are smiling.

This isn’t an entry about a path to acceptance or how far we have come. ¬†It’s not meant to tell you all the wonderful things that she has accomplished this year. ¬†I don’t feel like celebrating all the hard work and the progress, I just want to celebrate¬†her and who she is and what she means to our family.

At two, she’s fun and feisty. ¬†She loves to say hello to strangers in the store. ¬†She throws her arms out when she wants to be held and is crazy persistent with her demands.

Her favorite food is vanilla Oreos, which she daintily holds between thumb and index finger and slowly nibbles away at each night after dinner.  One cookie is never enough.

She doesn’t much feel like walking. ¬†Crawling suits her well enough for now. ¬†She has a great stink-eye when she’s not into whatever you are requesting that she do. ¬†The therapists get it often. ¬†So do I.

Her enthusiastic “Hiiieeeeeeeee” when I walk in the door makes me grin every time.

She’s upset by laughter still, but calmed by big hugs. ¬†She loves to read books and make animal sounds. ¬†She gets angry at bedtime. ¬†Bright and early in the morning, she pops up and chatters Ellie’s ear off until she gets a response.

She cracks herself up.

She sings.  It is the sweetest little sound.

She’s been worth every stretch mark and extra pound that I haven’t lost. ¬†Every chaotic mealtime with two small children instead of just one. ¬†Every frantic dash to clean up before therapy. ¬†She’s worth all of the everything.

And really, all of the everything is nothing compared to our love for her and our gratefulness to be raising her.

Two has come quickly.  The other years, I am sure, will be no different.  I am just so thankful to have her to say hi! when I walk in the door, to give hugs in the morning, to steal hearts and change minds and to teach her sister (and maybe some others) a little something about kindness and sharing and love.

Happy birthday, Tessa!

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