Yo soy La Lay

adventures in family, faith, and Down syndrome

Reflections on Motherhood, Year 6

For almost six years, I have been a mother. 

Last weekend, we sat on the couch while the girls played.  “Tessa, can you count for us?” John asked.

Slowly, Tessa counted from one to fourteen, skipping four through six, as she always does.  We cheered and clapped exuberantly.

With desperation in her voice, Ellie chimed in.  “But I can count to a hundred in Spanish!”

It was quite clear that she was looking for the attention that her sister had gotten.  We burst out laughing.  She burst into tears.

Parenting is hard.

This is really the only conclusion that I have been able to draw after these short years.  It’s tough, knowing how to help the little humans become reasonable, productive big humans.  It is worth all of the challenges, but Lordy, yes, it’s tough.

I don’t think that before the children came, I thought much about what being a mom would be like.  There were moments thinking about going to high school sports events, or chaperoning a field trip to the zoo, but neither John or I had a style or approach to parenting in mind – we’re more fly-by-the-seat-of-your-pants-oh-crap-we-have-no-milk-where-did-I-put-that-dang-pacifier kind of parents.  I’m glad that we have a routine and structure.  I think we’d benefit from about one more hour of play each day.  I walk a very fine line between being a reasonable/involved parent and a mom who is overly concerned with all the things she cannot supervise.  My kids watch too much Daniel Tiger (but we’re working on that).

By far, the most difficult aspect of being a mom for me is that both my girls need “mom-ing” that looks completely different and I have yet to find a way to be two different people at the same time (and they don’t seem particularly interested in being who I thought they would be either, thank goodness).

Silly kids.

One needs security and one-on-one time.  The other needs freedom to explore.  Neither is particularly responsive to my preferred method of discipline, the Time Out.  While both like to sing and dance, there is no interest in sharing the spotlight.  One loves to curl up in my lap and read books.  The other runs laps around the living room.  One is mostly compliant, and while she will whine about whatever work she has to do, do it she will.  The other – well… she does not.  One is scared, one has no fear, one needs gentle coaching and melts down in response to sharp words or anger.  Both like bribery. 🙂

What will number 3 bring to this chaos??

I’m certain that I’ll never have the answers or figure this whole “mom” thing out, but I’ll keep plugging away at it, like so many other moms do.  And sometimes I’ll make my kids cry, and sometimes l’ll help them laugh, but mostly I just want them to feel loved.

What more can I really do?


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Stability

Little known fact about me:  no matter how early the departure time, I will always, always take a shower before bringing Tessa to any doctor visit.

I’m not sure when this started, but I’ve determined that it acts like a security blanket for my nerves, like I’ve somehow decided that washing my hair and putting on make-up will somehow block us from anything bad happening.  Because if I’m cleaned up and ready for the long haul, everything will go smoothly.  You know how if you bring your umbrella on a cloudy day, it won’t rain?  Kind of like that.  If I’m prepared for the day, nothing can go wrong.

We had one of those appointments last Wednesday and since I now have all the information… here you go:

So there are several screening tests that we are to have with Tessa throughout her life.  Thyroid, sleep study, monitoring white blood cell counts for leukemia, eyes checked, heart scanned, etc.  The most recent test that we were to have done is the atlantoaxial instability neck X-ray.

Very very basically, the top two vertebrae on which the skull/brain sit are more likely to be unstable in individuals with Down syndrome.   Rarely, this can cause nerve damage or more serious complications.  Many times, certain therapies will require a child to be cleared of this instability (like to participate in equine therapy), as well as some extra-curricular activities (especially those that could involve head compression/injury like gymnastics).  Our pediatrician wanted to have her screened at three.  This was recommended by the American Academy of Pediatrics for some time, though I have been told that their most recent guidelines don’t require it.

In any case, we had the neck X-ray and at about 7 pm, I got a call from the pediatrician’s office and was greeted frantically with “are you still in the hospital?  We really need to talk to you about your daughter’s results.”

Not exactly the words that we were anticipating.

Their instructions were essentially to put Tessa, our wild and independent little runner, into a bubble until we could see a neurosurgeon.  What?? No PT, no physical education, no recess (what??)… do nothing until she is cleared by a neurosurgeon.  They told us that there was a high risk of paralyzation if she were to have a head injury (as they say this, I remember the moment with startling clarity when she fell down the stairs just three days prior).  The next day, the office made us an appointment to see a highly-recommended neurosurgeon within a couple of days.

To say that we were freaked out is probably the understatement of the year.  

It was a long wait until that Monday, but I will say, within a minute of meeting this doctor, we were totally at ease… because he’s clearly brilliant, but also because he greeted us by asking “so tell me, why did they send you here?”

His concern was much more minor, quite thankfully.  He didn’t see the severe instability that the initial radiologist must have.  We weren’t totally in the clear – because Tessa can’t well communicate with us symptoms that she might be experiencing (numbness in her fingers, neck pain, etc), we still needed to have an MRI to make sure there is no damage to her nerves.

The problem with an MRI and a three year old is obvious.  An adult can barely lie still for that long, let alone a child.   We would have to go into Chicago to our Children’s Hospital so that she could have the imaging done under anesthesia. Unfortunately, in my family, there is some history of complications with anesthesia, so we get a little more antsy than people probably typically do.

We finally had her MRI done last Wednesday.  A 5:15 departure time is not far off from my typical work day, but being on Spring Break… that alarm felt extra early.  The hospital staff was lovely, really, and while navigating the city (especially on Lower Wacker Drive where GPS is useless) is not my favorite, we managed.

The history with anesthesia always brings lots of questions from the staff.  Most people see one or two anesthesiologists before a procedure; we always meet the whole team.  Tessa was a trooper, and charmed the heck out of all the doctors and nurses with her manners.  She did take quite a bit longer than typical to come out of her daze, which made our time in the waiting room, waiting for answers, feel like an eternity.  When she finally came around, she alternated between her dazed, lovey schmoozing and intense irritation with anyone who took her juice and goldfish crackers.  It was hilarious.

I’ll cut to the chase here – on Friday afternoon, we got the call that her MRI was essentially “unremarkable” and that there are no concerns at this time.   We will continue to see this neurosurgeon off and on over the next several years to continue monitoring, as AAI may not appear until later in life.

For now, I feel like my superstitious shower helped us out once again.

#neverleavethehousewithoutmascara

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Not settling

I have been told recently that life isn’t fair.


This news doesn’t come as much of a surprise to me.  Once I moved beyond the age of oh, 14 or so, I never expected it to be.

The context of this statement, though, is what rattled me.  As I’m sure you can guess, the circumstances revolved around this little girl:


(when was the last time your face showed that much joy?)

You see, the political climate being what it is these days, I found myself in a debate of sorts with a dear family member about school choice and the impact that it has on children with disabilities.

Throughout our conversation, I was told about the great “special needs schools” that my daughter could attend.  Schools that “specialize” in her “special needs.”  Schools that are “specially equipped” to “handle” the “special care” of our “special girl.”


Dude.  Stop.

I tried to get someone to explain to me why it is that Girlfriend needs all this “special stuff,” most especially when research indicates time and time again that what is actually best for her is to be educated in a typical classroom alongside her typical peers.

(I mean, if you ask me, while she may be hard to understand, she’s kind of a standard three-year-old.)


The only answer that I got, really, was that life isn’t fair.  Basically, we just got dealt a shitty hand, so good luck.  Good thing there are those “special schools.”

I bowed out of the conversation there.

Here’s the thing.  

Down syndrome isn’t the reason that life is unfair for Tessa. It’s not shitty.  People are.  Down syndrome is not some awful life experience to overcome, but the belief that it is awful, is a problem. 


The problem is that no, life isn’t fair, but that doesn’t excuse us from the responsibility to make it better, not just for ourselves, but for anyone.

Our fight to keep Tessa in a regular classroom is very much about her, but it’s also about any other child who walks through the door of that school building – or any building.

(It’s also about the law, though that pesky little thing seems to be lost on a lot of people these days.)


It’s about changing perceptions about what people need.

Not pity. Acceptance.

Not charity. Kindness.

Not escorting off into some “special place” for their “special needs.”  Inclusion.


It hits you right in the gut when the fight is so close to home.  It is bad enough when perfect strangers are the culprit, but let’s be honest, it’s a thousand times more discouraging when people who know and love our sweet girl still don’t get it.  

We’re not settling for special.

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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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