Yo soy La Lay

adventures in family, faith, and Down syndrome

Ten… A developing story

This is my tenth year teaching.

I need to let that sink in a little bit.  It overwhelms me.  No, seriously.  I said it out loud today and I didn’t believe myself.  So I counted on my fingers to make sure.

I’m sure.  (Big gulp)

People who have taught longer than me will tell me that time flies, the years go faster, yadda yadda.  I know, ok?  I know.  It’s like telling a pregnant lady that if she thinks she is tired now, just wait until the baby comes.  

Some things are better left unsaid.

In my role as a division head, I only teach one class.  I spent the past two years working in our program for very academically at-risk students.  This year, I get to teach a class of Spanish again.  And so, on top of my minor freak-out about this being my TENTH year, I am also freaking out that holy cow, I have to remember how to teach Spanish.  I feel ready, but… I don’t know, nervous!

The first day of school is my absolute favorite.  I love the rush of the new kiddos, finding lockers, lost little freshmen, sharpening pencils, new outfits, old friends… It makes my heart swell every. time.  A year fresh and full of possibilities – it is the best.  And those nerves…. a thousand little butterflies ready to soar.

This year, I have been reflecting on where I will focus my energy, about how I will continue to develop in my roles in the building, but also in life in general.  It’s so funny, it’s like this new house has brought a sense of settling to life – things are still chaotic and ever-changing, but it feels stable, like I can breathe and think and do.

Part of my nerves, and oddly, part of my settling, is a song lyric that has been stuck in my brain for about two weeks now.  I think about it over and over, and then I pray about it, and wrestle with what it might mean.  I can’t get it out.  And with my tenth year gearing up to go, it just repeats and repeats…

“Every time somebody lives to serve and not be served…”

That’s it.

The message is clear as a bell.  There is no denying that.  How that serving looks in my world gives me much to consider, and certainly reflection on those times when I am living to be served merit reflection as well.  I can easily point to the others around me who I feel are demanding to be served, but this isn’t about them – it’s about me, and about a lyric that, in this tenth year, when life would seem to be settled, somehow is my driving force for change.

Go.

Do.

Try.

Help.

Love.

Live to serve and not be served.

This is a developing story.  More from the field as it becomes available.

To listen to the full song from which this lyric comes, see below:

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Size Matters


(Ellie and Tessa in the same 4th of July outfit.  Ellie is one. Tessa is two and a half.)

Two and a half.

25 pounds soaking wet.

A little tiny package bursting with laughter and joy and sunshine.

Our park district has an amazing indoor play area where we like to bring the kids to get their energy out.  It’s huge, with oodles of slides and soft-cushioned obstacles to climb through and around. They have an area that is just for little ones and it is there that we like to let Tessa roam free and explore.  Mostly because it is caged and keeps her out of trouble. ūüôā 

There are, of course, other children in the play area and I am so often amused when I see her surrounded by infants.  The sheer size of her peers is so markedly different.  And inevitably, another mom will come over to make conversation, hoping to commiserate on the exhaustion of having an infant in the house.

I wait for the question.  I know it’s coming because it always does.

“She’s so cute,” they say, “how old is she?”

“She’s two and a half.”

Inside, I cringe and wait for the response.  They vary, but usually it involves an effort to restrain eyes bugging out of their head and an oddly confused smile.  “Oooh,” they say, their eyes darting back and forth between my child and theirs, sizing up the differences.  Mostly, the conversation kind of dies.

One time, a mom literally asked me if I was sure.  She shared that her daughter is that same age and asked when her birthday is.  She thought I had miscalculated my own child’s age.

That was awkward.

A small part of me just wants to lie when I get asked.  Would it be any easier to just tell them she is 15 months or 18 or whatever number I feel like throwing out?  Maybe I’ll really wow them and say that she is 10 months.  That could be fun!

I think, as parents, we might all be happier if we could just stop asking each other how old our children are.  It does nothing good – just feeds into this urge to compare.  And what good are comparisons anyway?  One is potty trained, one isn’t. One is reading, one isn’t.  One is sitting or walking or talking or whatever.  Some are not.  They are not less.  Different, perhaps, but not less.

But more than that, I’m sad for the conversations that die out.  Our experiences are probably a little different in parenting, there’s no denying that.  But we can still share.  We are parents in the same community.  Our children will grow up near each other.   Commiseration gets us through some days!!  And even if my little one is on the scenic route, she’s headed in the same direction as all the other little ones – up, up, up.  I’m just a mom.  She is just a kid.  So let’s talk!


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The Walker

Ok, let me level with you here.

This is Tessa’s walker.


I hate it.

We have actually had it in our home for quite some time.  It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation.  I struggle quite deeply with the fact that her disability is worn on her face.  I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome.  When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now.  So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent.  So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time.  When Tessa’s therapists came, they suggested a session in the park a short walk from our house.  So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually.  She made it.

It’s not about me.  It’s not about the people who gawk as they drive by us peddling on down the road.  It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

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Control Freak

If our children always did what their parents wanted, we certainly would not have Chicken Baby in our home.  If you haven’t met Chicken Baby, here he (it?) is:

I am uncertain who thought it would be a great, marketable idea to put a Cabbage Patch doll into a chicken costume, but there he is.  And he’s aaalllllll ours!!  (And by ours, I mean Tessa’s.)
Who would choose this creepy little creature as a comfort object??

We acquired Chicken Baby on one of our nine bagillion trips to Target in the last three weeks (because new house, of course).  If children always did what their parents wanted, Tessa would have behaved herself on that trip, and we never would have ended up in the toy aisle, searching desperately for a soothing object that cost five dollars or less.  An entire rack of cute stuffed animals were lined up in front of us and we got Chicken Baby.  

I didn’t go into parenthood with many preconceived ideas of who my children would be.  I assumed that we would get some extroverts,  because we are.  I assumed they would excel in school.  I knew, before parenthood, that I could keep my girls from having a princess complex.  No pink frills, no referring to the girls as princesses. 

Last week at preschool graduation, Ellie was the only girl in the class who said that she wants to be “a princess” when she grows up.  

So there’s that.

One of the most difficult parts of parenting for me is letting go of my desire to control the choices that my children make.  They are young – we are not grappling with major life decisions here, but sometimes John lets Ellie pick out her own outfit and it makes me twitch just a little.


Or when she refuses to dress her Barbies and I continually have to encounter Awkward Barbie Moments… 

(This is tame.)

It takes every fiber of my being to Let. Go. on a regular basis.  It’s Type A parenting, desperately hoping to be just a little Type B, for the good of their development as independent women.

I think having Tessa has pushed me, just a little, to embrace the path that my child will follow, whatever that may be.

(OK, not whatever.  Bank robbery and juvenile delinquency are off the table.  As are jobs at establishments where women wear spandex shorts and push up bras.)

In any case, my own personal preference for matching clothes and markers with their caps on correct color probably seem like small potatoes, but I’m trying to use these situations as practice for the Big Ones, like choices about college and living arrangements and buying ridiculously overpriced clothing because it’s on fleek or whatever the new phrase for “cool” is at the time.

I feel as though they are going to give me lots of practice this summer.  And I need it.

Because seriously, the markers.


(Somewhere across town, my mom is laughing quietly to herself, smiling and saying ‘hehehe, now she knows what I went through raising her…’  I have an insane amount of respect for that woman.)

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The Tortoise and the Hare

Ellie is life in the fast lane.  Full on Autobahn, blink-and-you’ll-miss-it, one-stage-to-the-next kind of crazy.  She resisted some milestones, sure.  She waited to walk until the day before returning to daycare at 14 months.  She waited to potty train until the day before returning to daycare at just-over-three. But there has been no down time, no pause.  One day, she babbled, the next, full sentences. Seemingly overnight, she started reading.  We do not teach her these things, she is just a sponge, eager to fill with knowledge.  She learns independent of us.  We are just along for the ride through her life, holding onto the “oh shit” bar as she careens through each stage.

Tessa is the scenic route.  She is meandering through the hills and valleys, pausing to smell the wildflowers, nice and easy down the road.  We stop and look at the map frequently, making sure we stay on the course.  She gives us time to enjoy each phase.  She moves independently of us and the norms that others would deem appropriate.  We are along for the ride with her, too, basking in the sunlight in the backseat while she takes her own route.

Occasionally, my mind drifts to what a third child in our family could be like. Don’t get your hopes up, there are no plans right now. (We don’t seem to make plans anymore, as we know full well that our plans are small and God’s are greater).  I cannot wrap my head around a third – we have a tortoise and a hare, what next?  It’s just funny to ponder.

Free and easy down the road we go.  Kind of fast, kind of slow, but onward.  Always onward.

  

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Oh mama

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

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

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

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

No one knew.

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

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

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

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

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

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

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

  

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On trusting one’s intuition

Sometimes, I’m really good at listening to my intuition as a parent.

And sometimes, there are moments like last night.

I should have heeded our sitter’s warning when I picked up the children.  I always love the moment when I arrive to get the girls after a long day of work.  All of the kids come wobbling toward me, a little bit like Children of the Corn, babbling some nonsense about their day, all at once, none of it the least bit coherent.  “They are wound up today!” she tells me.

I got this, I think to myself, with no concern over my impending night of single parenting.  Ellie had been asking us to order pizza all week.  I’d pop in a movie, call up Vita Bella, and put the girls in bed a little earlier than usual.  No problem.

In this moment, I made my first fatal mistake: when Ellie wouldn’t put her shoes on and I was anxious to get home, I told her that I had “secret, fun plans” for us.

Through a series of unfortunate events, mostly due to the fact that Ellie had given up on her burning desire to eat pizza and still wanted “secret, fun plans,” (which I didn’t actually have), we ended up at Red Robin.  I knew it was a bad idea.  Every little voice in my head screamed “No!  Not tonight!”  and I ignored them.

If you aren’t familiar with Red Robin, it’s a hamburger joint that has generally been a really family-friendly environment (read: it’s incredibly loud).  Recently, our Red Robin has gone through a little remodel… they now have three “unofficial” sections: the adult (bar) section, the section for Parents Who Have It Together, and the Frazzled Parents and Loud Parties section.  There is a glass wall that separates the latter two sections, most certainly so that the Parents Who Have It Together can enjoy the show on the other side of the wall.  I’ll let you guess where they sat us last night.

Frazzled Parents, unite!!

In the instant that we sat down, Tessa decided that she was starving.  We have entered a phase of life where she can’t well communicate her needs, so there is a lot of growling.  Yes, growling.  Loud and forceful growling.

Three seconds later, Ellie told me that she needed to go to the bathroom.  Now I, as a parent with great foresight, knew that Ellie loves to check out public bathrooms and not actually pee, so I made her go before we left the house.  So, when she asked, I calmly told her that she would have to wait until we got home, feeling confident that she had just emptied her bladder.

Even after three portions of dinner and several soft pretzel bites (which I later found stockpiled in her cheeks and the roof of her mouth), Tessa continued to be starving.  She had had enough of the crummy, unsupportive high chair.  Ellie’s crayons were dropping all over the floor.  There was a lot of ketchup everywhere.

Before I knew it, Ellie was standing on her chair, announcing to me (and what felt like everyone in a five-table radius) that she needed to go the potty right now or the poop was going to come out of her butt.

I really need to listen to my intuition more often.

Our rockin’ night wrapped up soon after we go home… a lot sooner than Ellie would normally go to bed, in fact.  Later, I dozed off on the couch, only to be awoken by chubby little fingers poking at my cheeks and nose.  Tessa had been sitting on my lap, drinking her last bottle of the night, and was looking for more.  She smiled up at me with those little crinkly eyes and for just a moment, the events of the Great Red Robin Fiasco were a distant memory.

I can’t wait for tonight’s round two adventure….

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Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut. ¬†Miss Cranky Pants? ¬†Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

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November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club. ¬†He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG ¬† ¬† Tessa loves to play “sooooo big!” IMG_6706.JPG ¬† We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG ¬† Sticking out our tongues in solidarity with Tessa ūüôā IMG_6766.JPG ¬† So serious today…¬† IMG_6762.JPG ¬† A little happier in this one. ¬†ūüôā IMG_6734.JPG ¬† The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG ¬† We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG ¬† Holding her own bottle is super hard work!! IMG_6776.JPG¬†¬†Sister love. ‚̧

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So where’s my magnet?

Oh Ellie Bean, you sure can keep your momma on her toes.

So, we’re working on thank you notes for all of those who donated to our cause when Team Tessa ran in the Rock n’ Roll half¬†back in in July. ¬†We decided to order some ridiculously cute magnets with Tessa on them to send our supporters.

Ellie takes a keen interest in helping me do most anything around the house, especially things that she really can’t easily help with. ¬†Like writing thank you notes…. ¬†There’s no clear way for her to help write letters to our family and friends, but after more whining than I could handle a little consideration, I decided that she could put the magnets into the envelopes.

At first, she was totally enthralled with these little pictures of her baby sister. ¬†But, as her interest in envelope-stuffing quickly waned, she decided to spread all fifty out across the table. ¬†“Look at all these cute little Tessas!!” she squealed, lining them all up in neat little rows. ¬†Until….

Cue dramatic music.

“So,¬†Momma? ¬†Where is my magnet?”

Not upset, not mad, not annoyed. ¬†Just confused. ¬†And my brain just started to race… ¬†What to say, what to say?

We have made a decision that there isn’t a need for a sit-down conversation with Ellie about her sister’s genetic makeup. ¬†She’s a smart cookie, she hears us talking. ¬†We read her 47 Strings, she hears the words “Down syndrome,” and it’s just a part of our life. ¬†She doesn’t know what the difference is, or how it will change all of our lives, but she knows. ¬†So how do you explain this cause that we’re connected to, without diminishing the value of the child without a cause?

“Well Ellie, do you remember when we all wore our Team Tessa shirts and watched Daddy run a race?”

“Oh, yeah. ¬†Well, I choose this one. ¬†This one is mine.” ¬†(picks up a Tessa magnet and hops down from the chair)

And she walked away.

Oooooooookay. ¬† So my freak-out was unwarranted… this time.

I don’t worry about Ellie getting lost in the shuffle of having a sister with extra needs. ¬†Believe me, she makes herself the star of her universe with no problem. ¬†As we continue on our journey of this kind of “parenting on steroids,” there will be lots of tough conversations. ¬†Perhaps Tessa, too, will have “what about me?” questions.

Perhaps? ¬†Who am I kidding? ¬†Of course she will! ¬†I’ve never¬†subscribed to the “equal is fair” philosophy. ¬†I know that each kid will require her own special type of parenting, but explaining any of that to the other is… tricky. ¬†Good thing I’m going to get lots of practice.

And now, cuteness…. (which is, somewhat ironically, pretty Tessa-heavy this time.)

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This is her “if you think I’m done eating my food, you’ve got another thing coming” face:

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