Yo soy La Lay

adventures in family, faith, and Down syndrome

The Fine Line

(Typing on an iPhone is obnoxious.)

As we sat down to dinner last night, we wanted to talk to Ellie about the fact that I was going back to work in the morning. The conversation went as follows:

Me: El, Momma is going to work tomorrow, so I won’t be here in the morning.

Ellie: You’re gonna go be a teacher?

Me: Yup, I sure am!

Ellie: and Daddy’s a teacher and when I’m a person (the word she uses instead of adult), I’m gonna be a teacher too! And Tessa’s gonna be a teacher too!!

John and I exchanged a pained glance and inwardly, I cringed. Outwardly, there was a forced smile and a “yup, she sure could be a teacher!”

Can she?

There is a fine line that we dance around as parents of a child with Down syndrome… the line between being realistic, based on what history has shown us and being optimistic… unwilling to create some self-fulfilling prophecy that keeps Tessa from her full potential. That line is blurry. What is her full potential?? And while all parents think about this with their children, it’s different when the child is toting around an extra chromosome. It just is.

The truth is that I don’t care what job Tessa has, that’s not the point. A person’s job or income is not the measure of their success in my world. What I want is for her to have choices. I tell my students almost every day that their education will give them choices. And I want the same for my own child. Happiness and choices.

The words “fair” and “deserve” are two that often make me cringe. Life certainly isn’t fair and when it comes down to it, I don’t know that any of us deserve anything, good or bad. That doesn’t keep me from wanting or hoping for my girls. We’ll continue to walk that line between realistic and hopelessly optimistic… praying every day that we wind up on the side where the glass is half full.

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Back in the Game

Three. Two. One……

Go!

It’s back to work time for this momma. 14 weeks have passed since Tessa’s arrival (seriously.) and I have a boatload of students waiting for me to teach them again.

I go back eagerly, though slightly unsettled. This was a monster week of appointments for Tessa and the rest of the family. Three therapies (plus one supervisor visit), two doctors, one “let’s get acquainted with day care” visit, a broken car, a seminar on Inclusion (tomorrow), a visit to the store to buy some pants that fit my postpartum body… The list goes on.

And did I mention that both of our computers crashed this week?

I will soon write an update on Tessa’s progress. The iPhone is not so conducive to the amount of information that I would like to share. Suffice it to say that while progress is slow, it is steady… But we also have more questions than answers today. This is why I’m unsettled….

I miss my classes and my work. Really, really. I am one of those working moms that loves working. But I don’t know how to do all of the searching and learning that I feel like I need to do without my nice two-hour afternoon stretch while Tessa naps. Soon there will be grading and meetings and students who have needs to be met and then there are lesson plans to be written…. And that 4:45 alarm makes me tired just thinking about it. Normalcy is returning to the Lay household. A new normal.

Please wish us luck. And send wine.

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Three

These are three things that people have said about Down syndrome since Tessa was diagnosed.  All three have been bouncing around in my brain for a little while now.

1. “You treat your child with Down syndrome like all of your other children – you just expect less.”

This statement came from an elderly woman who had raised a child with Ds many years ago.  God bless her for doing her very best with the information they had back then.  One of the greatest blessings so far in Tessa’s life is that she has been born into a world that has learned a lot (and is still trying to learn) about the potential of a child with Ds.  We are seeing more and more that there are FAR fewer limits to their potential than we thought.  My years in education have taught me that you can be firm, fair, and consistent with your expectations, but that you cannot treat all of the children the same.   My expectations for Tessa are consistent with what I expect from Ellie, but the approach to get her there will be different.  And like all of us in the Ds community, it is now our life’s work to break down the antiquated ideas  of what our kids can and cannot do.

2. “Every parent of a disabled child says they wouldn’t change their child.  But that doesn’t mean that you wouldn’t have chosen to terminate had you known before she was born.  It’s selfish to have a child like that.”

No.  Just, no.

Apparently, I made someone mad when I wrote about Tessa’s beautiful life and how I was so glad that she was born.  I didn’t ever think I would get a response like that… My only answer is no.

3. “I’m afraid that you guys won’t be fun anymore.”

A dear family member wanted to express the concern that we might become so wrapped up in the hard part of Down syndrome that we would lose our “zest for life.”  John and I really like to have fun.  We joke around approximately 96% of the time and generally find joy in most of what we do.  Clearly, not everything we go through with Tessa will be joyful.  But laughter is our lifestyle, we don’t go one single day without giggling about something.

When we got married, John and I vowed to have a strong marriage first, a strong relationship with our children second.  We believe that it is vital for our children to see their parents in a loving, committed relationship… we joke about our “united front” in our decision making all the time, but it really is something that we take very seriously.  And while life isn’t always easy and we don’t always agree and sometimes our kids take a lot more and we are left with only a few moments, those moments are important.  We aren’t willing to give up fun.

So to my dear family member, while our family might be a little different, so too will yours be when your family grows again.  However, in our house, priorities are priorities, and fun will be had.

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On Being Two and a Half

Here is a conversation that I literally just had in the car with Ellie:

Ellie:  Oh man, I lost my booger.

Me:  What?  What booger?

Ellie: My booger from my nose.

Me: (silently pray that it’s gone, long gone… or better yet, that it was just imaginary) umm…. How did you get a booger?

Ellie: Oh I got it.  From my nose.  (pause)  It’s not on my hand.  And it’s not on this hand either. (pause, then squeal)  HERE IT IS.  On my cheek!  I have my booger!!  My stupid booger.  Mom, do you know the “stupid” word?

Me: (in my head: oh yes, I know it well.  As a matter of fact, I probably taught it to you.  Crap, she pays way too much attention… I need to stop gossiping in front of her.)  Umm…..

Ellie:  It means you die.  And you have a stinky shirt and you don’t take a bath.  Can we go to Mimi’s house? 

I will miss two-and-a-half someday.

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My first date with Down syndrome

Almost exactly a month ago, I wrote about how I was trying to find my place in the Down syndrome community.  I’m still working on that.  Last night, I made some progress.  

I joined a group called UPS for DownS.  It’s a group for parent advocacy, social gatherings, etc.  And last night, we had our first date.  🙂  Like any good potential partner, they sent me a little gift prior to our night out.  Generally, I’d prefer flowers or chocolate, but this care package was pretty sweet:

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I agonized over my outfit for a good part of the day.  Should I be casual?  Is a hoodie too casual?  And I’m three months postpartum, so let’s be honest here, my clothes aren’t exactly fitting as well as they should.  They don’t fit at all, really.  After tearing apart my pre-pregnancy wardrobe, my maternity wardrobe, my post-Ellie wardrobe and a considerable number of clothes in the hamper that didn’t smell too bad, I settled on a sweater and jeans.  I wore green… and for a second, I wondered if it was a faux pas to wear green the day after St. Paddy’s.  Too bad.  It was on, it fit, I was going with it.  So then it was 3:00 and I wasn’t leaving until 5:30.  Let the thumb-twiddling commence.

Just like when I was 14 years old going on my first real date, I took a chaperone, my mom (the children needed a babysitter, so John stayed home with them).  We (I) nervously chattered away in the car.  We got there too early, we went to grab some food, our waitress disappeared, then we were almost late… it was all very dramatic.

When we finally arrived, I was clearly the new girl.  First of all, the evening began at 7:30.  We arrived at 7:25ish and everyone was seated, chatting, wine in hand (yes, wine.  OK, I’m at home now).  My name tag on the table was accompanied by a blank information sheet waiting to be filled out.  And there was a welcoming committee.  It was quite sweet actually.

Since Tessa was born, I scan every room I enter for another child with Down syndrome, wondering if others actually do exist in my part of the world.  I’ve always imagined that I would see them and be brave, say hello, introduce Tessa…. and here I was, in a large room filled with parents who have children just like mine… and I literally had no idea what to say.  Everyone was very considerate, friendly, welcoming, concerned for my emotional health (which is quite good, thank you very much).  After the presentation (on sleep apnea… which was fascinating and exhausting all at the same time), lots of moms came to say hello and invited me to keep coming back.  

(One mom did mention my day-after-St. Patrick’s Day-green clothing.  I don’t think it was a bad color choice, after talking to her.)

It was a successful evening and I think we’ll go out again.  Maybe next time I’ll bring John to make it interesting.  I don’t think that Down syndrome and I will be breaking up any time soon… we’re getting along quite well.  

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A Day in the Life – WDSD 3/21/14

For World Down Syndrome Day, the Ds blogging community has been called to tell you all what life is like for us, The Families of a Child With Down Syndrome.  This is hard because in my family, we’re in transition right now (or at least will be very soon).  My maternity leave is slowly but surely coming to a close and I’ll be off to work before this month is over.  My days right now are blissfully unremarkable.  Sure, Tessa has a few extra doctor appointments and we do some therapy here and there, but in reality, the care of my newborn is not unlike the care of Ellie, my “typical” child, when she was first born.

We get up in the morning.  She eats.  I shower, she stares at the ceiling fan (it’s soooo interesting!).  She eats, she pees, she does her exercises we play, she snoozes… and so the day goes on.  After a few cycles of this, sometimes we go to the store.  Sometimes, we put on music and dance around.  Occasionally, she gets a bath.  If her hair doesn’t get combed, she looks like this:

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Later in the day, we get in the car to pick up Ellie.  Our day gets slightly more interesting once Big Sister is in the house.  Suddenly, the world is noisy.  There’s Daniel Tiger on the TV, loud crashes of toys being tossed about the room, the microwave is running, Ellie is talking in a ridiculously high voice, shoving some stuffed animal in Tessa’s face, trying to engage her in play.  When John comes home, there’s some rough-and-tumble play (Tessa just watches, I promise!), dinner, stories, bedtime.  It’s all very uncomplicated.

Once a week, there is some therapy.  The therapists come to our house and do exercises with Tessa.  We do them too, when we play with her.  It’s not work now, just purposeful play.  When Ellie is here, she tries hard to steal the spotlight.  Our PT always brings some special toys for Ellie and that helps.  My house is a lot cleaner than it used to be.

Weekends are busy as they always were.  We go to church, we get together with friends, we leave the kids with a babysitter and go out to a bar or to dinner.

My message, from a new parent to a newer parent, is this:  In the beginning, when you hear that your child has Down syndrome, you stop breathing and think that your world has just turned upside down.  And in some ways, I suppose it has.  But mostly, you just have an infant to care for, one that is mostly like the other infants that you will care for, save for that pesky extra chromosome.  There is some new language, you have some long-term things to think about, but you have time and resources and a community of supporters out there cheering you and your little one on each step of the way.  Your child’s milestones are our milestones, we join you in your worries and doubts, your cheers of joy, your frustrations, your amazing breakthroughs.  To the new parents, we support you, we’re here for you, and we’re proud of you.  Welcome.

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The State of Our Union, 1st Quarter 2014

It’s hard to believe that 2014 is (almost) a quarter of the way finished. Spring is taking its sweet time arriving in our area. It’s been a rough winter!

And so an update on the family:

John and I

No one really wants to know about the adults… but it’s 7 AM on a Saturday morning and we are both showered, dressed, and ready to start the day… and yet, our small bosses children are sleeping the morning away.  John is clicking away at his laptop, working on yet another grad school project and I’m sitting here with my ear pressed up to the baby monitor, desperately hoping to catch the moment when Ellie wakes up and realizes that Tessa spent the night in their room with her for the first time.  Tessa has finally graduated from her pack n’ play-in-the-closet set up to her crib… but I digress.  I’m talking about the adults, right?  John’s at the point in his grad school that I was exactly one year ago.  He’s tired (I’M tired) and feels like there is no end in sight.  He’ll be finished in December and perhaps then we’ll have just a tiny bit of an ease in the chaos of life.  Of course then I’ll probably get the itch to go back to school or I’ll take on some project that I really don’t have time for and we’ll be back to crazy.  I think we kind of like it that way anyway.  So John is grad-schooling and coaching and teaching…. and me?  I’m kind of jealous.  I just really need to go back to work.

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Ellie

Our crazy (CRAZY) child has had another explosion of language growth.  She’s already very verbal for her age, but now she’s connecting ideas and feelings, asking questions that are complex and interesting, and singing songs that are incredibly inappropriate for a two-and-a-half year old (totally my fault…….).  She’s still a total klutz.  My mom tries to tell me that she’s just too busy to really be careful where she is walking, but I’m fairly certain that she’s just the kind of athlete that I was…. not an athlete at all.  We all have our strengths and weaknesses.  She and I went out for a Mommy/Ellie date this week at Red Robin like we used to do before Tessa was born.  We even got dessert.  🙂

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Tessa

And then there is the peanut.  She’s just about THREE months now.  Suddenly, she’s very smiley and engaging.  She’s making some other noises than crying.  Her first noise was an “are you kidding me??” yelp.  Now there are happy coos as well.  Her physical progress is… progressing.  In PT, we’re using some kinesio tape on her belly to help her build up strength in her core.  She’s not able to lift her head up as well when she has it on, but I’ve been assured that she’s not regressing, she just has to re-learn to lift it using the correct muscles and posture.  She also gets to start wearing “hip hugger” pants to keep her frog legs from turning into a long-term problem.  We’ll see the developmental therapist next week, but I’m sure she will be happy to know that Tessa is smiling much more, maintaining eye contact (mostly with me), and when I move out of her vision, she looks for me.  Small victories.  And then there is speech.  No progress to report here with Tessa.  She’s still feeding in the side-lying position and doing well with that.  I’m also more comfortable with it – and getting more comfortable letting other people feed her in that position.  We were working on a transition to more upright, but she has had a cold for a few days and it’s hard enough to get the food in with a stuffy nose that we’re waiting until that clears up to experiment.  For now, the focus is on holding her differently so that she gets used to being in a more upright position.  We’re still doing some mouth-stimulating and working on the pacifier (though she has found her thumb and really likes it.  

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I made the mistake the other day of pulling out Ellie’s baby book and looking at what she was doing at 2-3 months.  Well,  I don’t know if it was a mistake, but it certainly hit me like a ton of bricks that Tessa is just going to take longer to do what her sister could.  I’m wondering what this little girl is going to be like when she’s bigger!!  Who will she be?  What will she sound like?  What will she do?  Don’t we ask those questions about all of our children??  I’ve been forcing my way through the book Eat, Pray, Love for months (I have no idea why it’s taking me so long) and she wrote about these phrases that you chant through meditation to center yourself.  I don’t meditate (do people really have time to do that??), but I do have my own phrase running through my head when I get frustrated: she will do it, in her own time.  Sometimes I need to say it a lot, other times not at all.  But it’s a reminder to me that we’ll get there.  In her time.

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A lack of productivity

I am two weeks-ish away from the end of my maternity leave.

For the record, I don’t think time has flown by.

However, I am also in denial about actually working again. It has been so long since I was in front of my classes. Especially considering that no one (and I mean no one) could have imagined the birth of my girl would be what, and when, it was.

I’m looking around my home tonight at my half-finished projects, wondering what exactly I accomplished in the last three months.

Back in September, the big conversation in our house was ‘should I take 6 weeks or 12?’ I really like to work. I was afraid that I would be bored at home. I wanted six weeks, we compromised on nine. And as my nine-week mark passed this week, I have to swallow my pride and say that John was right on this one and I’m so thankful that I was able to be home with Tessa for 14 weeks total. (I hate to be wrong. I cried tears of joy when they told me Ellie was a girl simply because I was right and everyone else was wrong.)

When we decided on nine weeks, I made myself a list. I had big plans to get some serious work done around the house. I had books to read. There was even a Pinterest board created called “my lonely leave,” filled with crafts and projects to keep me busy.

And after nine weeks, I still have Christmas presents to be put away.

But I have accomplished so much… learned so much… grown so much. I’m comfortable going back now, though we haven’t come as far with Tessa’s feeding as I hoped. Still, it is enough.

My house might not ever be clean again, but it is enough.

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Happy birthday, Love!

(This is my second post in a month dedicated to my husband.  My apologies.  He’s embarrassed, which is kind of why I do this.)

The past weekend was so incredibly busy for our family, but also so joyful!  We celebrated my husband John’s 29th birthday.  I love his birthday because every year, I am reminded of how wonderful our friends and family are.  We are so blessed!!!  We always celebrate with a night out at a favorite bar that serves a variety of craft beers (as well as vodka cranberries…. which is why I’m still tired today).  So many of John’s friends come out to have a drink with us.  We were even joined this year by one of his best friends and his girlfriend, Aaron and Kim, who flew in from Kansas as a surprise!!  So cool!  I love Kim because she’s in a PhD program for child psychology and even when I tell her the craziest of stories about my children, she assures me that they are just fine.  🙂

As for the birthday boy…. for whatever reason, it seems that his birthday, March 10th, tends to bring great weather to the Chicago area each year.  It’s probably very coincidental, but for as many years as I’ve known him, his birthday has been a take-off-your-coat-for-the-first-time kind of Spring day and today is no different.  Tessa and I are soaking in some great Vitamin D today!!  I think I pay such close attention to the weather today because of the story that John’s mom tells us every year about his birth…

When Judy was pregnant with John, he was quite a surprise.  She did not even know she was pregnant until about four months into the pregnancy.  As is common practice, they had an ultrasound to check on John’s development.  At that visit, doctors could not detect any arms or legs on their precious little baby.  When the doctor shared with them that John would have no limbs, he encouraged them to consider terminating the pregnancy.  My in-laws were astounded, but took no time to decide that this was their child and that he would be born as God intended.  Whatever he was at birth, he would be loved and cared for by his parents.

John’s birthday was weeks earlier than expected.  It was a cloudy, cool day when Judy went into the hospital.  After laboring for only a couple of hours, John was born weighing 5 and a half pounds, with arms, legs, 10 fingers, and 10 toes.  Literally, when he was born, the sun came out, the temperature soared to 62 degrees (20 degrees above normal) and, as she tells us, all the nurses were taking off their sweaters and going outside to soak in the warm sunshine.  This may be cheesy, but he has been bringing sunshine to all of our lives ever since!!  I am forever grateful to my in-laws for their faith in God and in each other, that they would trust in Him and His plan for their family.        

So to my wonderful husband, happy birthday.  Thanks for being such a light in my life.

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Lent

Growing up Catholic, I’ve always done something to mark the forty days of Lent.  I attend a Lutheran church now and there is, at least in my experience, much less emphasis on the “giving up” than what I had previously become accustomed to.  However, it’s always stuck with me that we should, in some way, mark these days.

(In previous years, I’ve given up alcohol… this year, that ain’t gonna happen.)

As we chatted over dinner on Wednesday night, I asked John what he was going to do.  He said “oh, the same thing I always do.  Give up Sports TV.  Except the Final Four, of course.  What about you?”  It kind of struck me in that conversation that he and I were starting to go through the motions of Lenten sacrifice.  (God gave his Son for us and we can’t be inspired enough to give up beer and basketball?  We need to refocus!!)  Especially in a year when Ellie has become very cognizant of who is doing what and why, I feel the need to step it up.  Not just for her, but for me, too.

After a day of soul searching, I got the knock in the head that I really needed.  Our blog friends over at David and the Giant posted this list of 40 Random Acts of Kindness and immediately, I texted it to John to ask what he thought.  He was in!  I was in!  We may be a couple of days behind, but we’re doing it.

Here is our list.  We have modified from David and the Giant to fit our lifestyle.  🙂

  1. Pass a gift card to the person behind us at Panera
  2. Send a “hug” in the mail
  3. Donate toys to a shelter
  4. Bring my children’s child care worker a yummy dessert
  5. Relay an overheard compliment
  6. Sign up to help at Feed My Starving Children
  7. Pay for the person behind me at Starbucks
  8. Bring treats to the nurses at the NICU
  9. Donate books to the library
  10. Send a note to a family with a baby in the NICU
  11. Hold the door open for a stranger
  12. Leave my Postal worker a thank you note
  13. Mail an old picture to a dear friend with a note about the memory
  14. Put a lottery scratcher in a library book for the next checker-outer to find
  15. Send a thank you card to a favorite Grad school professor
  16. Write a positive review on Yelp for a place I loved
  17. Donate clothes to Good Will
  18. Bring coffee to a coworker
  19. Let someone go in line in front of us
  20. Send a letter to a former co-worker telling them what I appreciated about them
  21. Say “hello” to people in the grocery store
  22. Leave a thank you note for our Pastor in the offering plate
  23. Change my Facebook status to a compliment of one of my friends and tag them so all of their friends can see
  24. Bring Ellie and Tessa to visit a great-grandparent
  25. Have Ellie mail a card to a friend
  26. Donate baby clothes and blankets to the NICU
  27. Bring healthy snacks to leave in our shared offices at work
  28. Clear our neighbor’s sidewalk after snow.
  29. Call a restaurant where I received great service and compliment the employee to their manager
  30. Leave a big tip when we go out to eat with a kind note
  31. Have Ellie color a picture for a friend
  32. Pick up trash in the common areas around our house
  33. Return someone’s shopping cart
  34. Bring flowers to someone special in our life
  35. Use my blog and Facebook to ask friends and family to donate to the National Down Syndrome Society (NDSS)
  36. Offer to help a coworker finish a task
  37. Pay a compliment to the trickier students in our classes
  38. Donate canned goods to a food pantry
  39. Leave a bag of candy at our neighbor’s
  40. Share a positive email with a parent

For more really awesome ideas for Random Acts of Kindness, check out http://www.randomactsofkindness.org/

http://www.joyshope.com/2011/10/happy-sunday-with-printable.html

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