Yo soy La Lay

adventures in family, faith, and Down syndrome

Lost

I do not know the country in which I live today.

Let them in.

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Obligatory Year-End Post

It appears that we have two options here:  we can look back at 2016, full of woe and frustration for the many things that overwhelmed us, pushed us, didn’t go our way, or we can choose to be grateful for all that we have with which to enter 2017. 

My choice is to be grateful.

(That is not to say that my phrase of the year still wasn’t “but that doesn’t even make any sense!” but I digress.)

In any case, three cheers from 2016:

Cheers to deeper relationships

My babies spent half of 2016 developing relationships with their grandparents that could only have come through those sleepy Saturday mornings and chaotic nightly dinner scenes.  We may have lost in independence for that brief time, but there is something to be said for the opportunity to enjoy my children through the eyes of their grandparents.

And on our own, in our cozy house, with no money to go anywhere or do anything, followed closely by All The Germs, our family of four grew on our own again, figuring out our new routines (must make lunches after dinner) new rules (no ice cream unless we walk there), and new traditions (hello, parade right in front of our house!).

Cheers to solidarity

The political season has left deep, scarring wounds on so many of our hearts.  But I think, at least for me, there is some comfort in the voices I found that banded together against ugly words and behaviors.  My hope for 2017 is in the willingness of so many to still stand up for rationality and compassion.

Cheers to Taking Care of Each Other

I started the school year with a reminder to myself that we are called to serve and not be served.  It has been challenging to live this every day. (Most especially when pregnant.)

Challenging, yes, but in those moments when I listen to my heart, oh so worth it.  

2017 is not the year that I lose my baby weight. It’s not the year where I get fit or dedicate myself to making time for me.  Instead, I’m forging forward with serving.  I feel like right now, it’s the least I can do.

May courage, compassion, and empathy rule in our hearts in 2017.

❤️

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The Letter

Dearest Friends and Family,

If there were ever a year to write a Christmas letter to you all, this would be it… which is also why it didn’t happen (at least not in time to be mailed with our cards).

(And while we’re at it, can we talk about the Christmas miracle that is me getting ANY cards in the mail by today?)

It’s so odd, during this time of social media, that a letter might need to be written.  And yet, here I am.  So forgive me if you’ve heard this craziness already.  I just want to relive the mostly-mass chaos that was 2016.

I suppose that our biggest news of 2016 was that John decided to coach basketball!  This has been an amazing addition to our family schedule.  The girls and I were really lacking quality “girl” time together, so it’s been a great blessing to have them all to myself every day… especially since we got our Karaoke machine.  There is never a dull moment in our home!

Because of John’s coaching, we realized how much better zone defense is, as opposed to man-to-man coverage.  This relevation lead to another development – Baby Lay #3.  Surely if the middle school players can do so well with zone defense, John and I will love it as much in our own home.  The girls are actually quite excited about the new addition, whom we expect to arrive in early June.  Once again, Ellie has reminded us that we are only allowed to bring home a girl.  John is praying every day for a son.  He has even asked others who are expecting if they might be interested in a trade, should this baby’s gender not work out in his favor.  We won’t be finding out boy or girl until June though, so you’ll have to wait for the surprise!

Most other exciting news items from this year are probably best bulleted.  So here you have them:

  • We bought a house and moved.  We will never be doing that again.
  • Within a week or so of moving in to said new house, we locked ourselves outside with two mostly-naked, ice cream covered children.  Multiple squad cars and a fire engine came to rescue us.
  • Tessa started walking, talking in sentences, and really testing our ability to child-proof anything. We are failing at this.  She will start preschool in two weeks.  I suspect that they will be much better at channeling her lively spirit toward good than we are.
  • Last year and this year I planned a big conference for Down syndrome and now I’m on the Board of Directors for that organization.  I love keeping the plate full!
  • Ellie started her Dual Language kindergarten, where she spends about 80% of her day learning in Spanish.  This has been incredibly useful when she and I want to have secret Mommy-Ellie conversations.  However, it also means that I get reprimanded by my five-year-old in two languages.
  • The girls had lice for like a month.  That was awesome.  It’s also pretty much why we hibernated through most of the fall.  It’s all better now.  Knock on wood.
  • John ran another half marathon to raise money for UPS for DownS.  Thank you all SO much for donating to our cause.  It was a great day with crazy weather.  Looking forward to another race in July!

I do believe that we have about summed up our year, save for the runny noses and random family excursions that keep us busy (and happy!) throughout the year.  I hope you all are able to look back at 2016 with at least a few fond memories as we are.  I know that we are all looking forward to 2017 and the roller coaster that no doubt awaits!  Cheers to a wonderful holiday season!

Much love,

The Lays

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Three

The holidays always lend themselves well to being nostalgic. It’s almost required, isn’t it?  And when we throw Sweet Girl’s birthday into the mix, sheesh, pull out the Kleenex!

I keep sitting down to share her milestones this year, to tell you how far she has come, and to celebrate the joy of having her big personality in our house.  The problem is, all I keep focusing on in my own mind is that there is no picture of Tessa and I together on the day she way born.


Funny what the mind holds on to.

There is no sadness in her existence.  There is no wistful dreaming of taking away her struggles.  There is only a smiley, fun, curious little three-year-old with an independent streak a mile wide.


She loves to wander from room to room, searching for items that are supposed to be out of reach to pull down and steal for her toy room.  Current favorites are my pot lids and mixing bowls, along with any of Ellie’s coloring utensils.


She wants to do all of the things that her cousins do, and insists on being included in the fun.  She is always singing.  She is always talking.  She has excellent manners, though the phrase “no, thank you” is more of a curse than a blessing these days!


She loves pretzels and broccoli and frosted animal crackers.  She grabs books from the shelf and tells you to sit so you can read them to her.  She gravitates toward people who are hurting and gives great big, melty hugs, drumming her tiny little fingers on your back to make sure you know that all is well.

In three weeks, she’ll take that little preschool classroom by storm.  Tessa’s huddle will get bigger and bigger.  And as freaked out as I am to send her into the giant world, I can’t wait to go on this adventure in the passenger seat.


Happiest of birthdays, Tessa Lynn!  How thankful we are that God sent you to us. ❤️

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Turning the page

I have long dreaded this week.

For as long as we have been working with Early Intervention, I have taken great comfort in our services.  The routine of therapy visits, the work to help Tessa move and speak correctly, the comforting relationships that we developed with each of her therapists… as I have said before, EI has been a lifeline for us. 

Admittedly, balancing this summer’s therapies with our family’s on-the-go nature was tough.  We skipped a lot of zoo/pool/friend time to fit in her sessions.  We grew tired of the daily interruption.  

And this week, as therapy fades away to nothing, we prepare for the transition to school.

Probably, the school transition is what has caught me so off guard.  Transitions have always been hard for me.  We have been prepared – and are eternally grateful to our local group, UPS for DownS, for helping us to be so, and still today I cried because my baby is going to have to carry a backpack that is as big as she is.  She is so excited about that and like many other times in motherhood, I just have to be excited for her new adventure.

Our evaluation and IEP meeting with the school district could not have gone better.  We worked as a team and they gave us choices and input into her services.  They listened to what we know about our girl and created a plan with us that will play to her strengths and support her areas of need.  When we again mentioned our plans to enroll her in Dual Language kindergarten, there was an audible murmur of excitement.

We are in the right place.

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Sunday Snow

I’d like to order up a few more Sundays like this one.


Just a few.  Enough to get us through Christmas, then we can cut this off.  But seriously, swooooon.

It has been almost a month since we last wrote anything.  Have you missed us?  It’s been a little busy since Halloween.  Not that we aren’t always on the go, but

Sick. Roseola. Lice. Flu. Coaching. IEP stuff. Thanksgiving.  First trimester. Broken computer. Broken internet. Broken hearts. Lots of heavy. Lots of sad. Lots of good. Lots of nausea.  Evals. Paperwork. Conferences. Big news. Frustrating news. Tired parents. Hyper kids. More lice. Plumbing issues. Car issues. Phone issues.

And no wine! Boo!

As my energy is coming up a bit, and the words start rolling around even more up in my brain, I’ve got to get back.  Friday night, I was lamenting to John about my need to write, but inability to get to it.  Gotta get the words out.  Got to.  So get to it I will.

In the next week, we have a big transition from Early Intervention to IEP.  So much to say… so much to share.  For now, I’m going back to enjoying the snow (from inside the house) and mulling over all the things I want to tell you.

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Dear Tessa

Dear Tessa,

I’ve been thinking a lot about what I want this to say.  Saved this one for last because it’s got a whole lot of emotions behind it.  Kept it short and sweet so that I don’t become a blubbering fool.

I didn’t know what it meant to be an advocate for someone until there was you.  I mean sure, I have rallied for family, for students, for classmates, coworkers, you name it.  But it all pales in comparison to my drive to be your champion.

There is no corner of my life that was not completely transformed by your very existence.

I want you to know that no matter how long the road is, I’m here for you.  My goal is to be your voice only as long as you need me to be.  All I want is for you to be happy, no matter what happy means for you.

I am not fearful of our future.  I am not worried about how far you will go, or where you might stumble, or how much work there is to do.  I know that there is much to think about and plan for.  I will be brave because you are worth it.

You don’t have to be more alike than different, but you can be if you want.  You don’t have to rock the 21st, but I think you already do.  You don’t have to be a Down syndrome superstar on YouTube or in the news for breaking down barriers.  But if you find a dream, let’s chase it. 

Girlfriend, I adore you.

Wuv yeeeewwww!

Mommy


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#DearDoctor

Dear Amanda,

In the instant you said Down syndrome, you shattered our world into a thousand bright and beautiful pieces.  I had labored, fast and furious, and in the chaos of her birth, with all of the noise, the oxygen, the vacuum, the frantic prayer to cry, baby girl, cry, there was then stillness.  And quiet.  And grasping for understanding.

I was not fully present when we first heard the words “Down syndrome.”  I was in the final stages of labor, so very far from my husband and my baby.  I overheard the words across that room – that giant, cavernous space.  I pushed away from my bed and propped on my elbows, trying desperately to hear.  My husband is not a good listener, you see.  And he was there and I was not.

It felt nonchalant, the pronouncement.  I often wonder if everyone in the room already knew and thought that we probably knew, too.  We did not have time to process.  In an odd turn of events, suddenly my mom was there and we were moving forward and there were tests to be done and then I was in my recovery room without a baby, listening to a genetic counselor tell us about how soon we would know for sure.  “Look, I’m telling you she has it.  There will be a blood test to confirm,” she told us, “and I’m going out of town, but my intern will call you.”

The first moments when a parent hears the words “Down syndrome” are jolting.  The delivery of a diagnosis sets the tone for how those first weeks will go, how information will be processed – and in many cases, will have a profound impact on the life of that little baby.  In that delivery room, in that moment, your relaxed and matter-of-fact proclamation made this diagnosis seem irrelevant – and it didn’t feel like it should be.  Now, it seems that you were right, that Down syndrome is a distant second to Tessa and her personality and big, toothy grin.  So I thank you for that.  It is part of her, but is not her.

Every mother in the Down syndrome community, whether her child is two or sixty two, can tell her diagnosis story like it happened yesterday.   Please help us make those stories powerful, not because they are devastating, but because they are positive.  While our own diagnosis story is by no means grim, note that the guidelines published by the National Society of Genetic Counselors recommend telling both parents, together, at a time where information can be shared and processed appropriately.  A balanced, open dialogue that includes current and relevant information about the potential of individuals with Down syndrome, as well as their influence on the family structure, can go a long way in changing perceptions about Down syndrome for families, as well as in our society as a whole.

You see, while our world seemed shattered on that day, with information and support from the Down Syndrome Diagnosis Network and our local groups, we have built those shattered, beautiful pieces into a life far more vibrant than we could ever have imagined.  Your part in that story is etched into our hearts forever, and I invite you to join us in helping others start their journey surrounded by all the love and support that is available.

Thank you,

Maggie

To provide anonymous feedback to your physician regarding a Down syndrome diagnosis, please use the Down Syndrome Diagnosis Network’s Physician Feedback form, found at  http://www.dsdiagnosisnetwork.org/feedback.

Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org

 


 

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Dear Ellie

Dear Munchie,

This is a picture of you at your Big Sister class, before Tessa was born:


We couldn’t tell that day if you were ticked off that you were getting a sibling, or if you were insulted that we thought you needed to learn anything about taking care of babies.  From the get-go, you told everyone who would listen that it was a girl baby in Mommy’s belly and that a boy simply was not a possibility.  Thank goodness you were right.  You are not so easily convinced of the things that you do not believe to be true.

For example, when we ask you about Down syndrome and what might be different about Tessa, your only answer is that she has more strings than you do.  You seem to not notice the little differences that set her apart – and when other kids point out her braces or her walker, I love how you so matter-of-factly say “well she just has them.”  Like duh, of course she does.  Why wouldn’t she?

The child who asked us about medical marijuana because she heard it on the radio, and who is surrounded by talk of therapists and doctors and IEP goals, has no reason to believe that Tessa is any different than anyone else.

I am so proud of the model you are for others by just playing with Tessa as you do any other child.  Sometimes you get mad at me when we treat her differently.  Like this morning when I told you to stop putting so many puzzle pieces in front of her because it was too overwhelming.  You just looked at me, then continued to stack them in front her. “It’s part of her lesson, Mom.”  Ok, little teacher.  Do your thing.

I don’t think we have to worry about you being your own person; you have already made it perfectly clear that you will be just who you want to be.  There was some very tiny fear in me when we first had Tessa that you might get swallowed up into a life that revolved around her needs.  However, that fear quickly vanished as Down syndrome has faded into the background and your (very large) personality has really taken center stage.  I think that in the ebb and flow of family life, you and she will alternate in the spotlight… and sometimes you’ll share it (in which case, we will be tired).   In any case, I’m so glad that you are you and she is she – you are the most darling little set of sisters… even when you fight.  I won’t ask you to do anything more for her than be yourself, but I have this feeling that your own heart will lead you to being a champion for her… and her for you, too.

I’m so proud of you.

Love,

Mom

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Dear Blog Readers, Take 4

Dear Blog Readers,

Go Cubs Go!!

Happy Friday,

Maggie

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