Yo soy La Lay

adventures in family, faith, and Down syndrome

The First Day

I will never argue that teaching is the hardest profession.  There are lots of people who do hard work in other jobs.  I can’t easily make an argument that we need a summer more than anyone else… all I can say is that in my experience, the amount of stuff that we cram into a nine-month school year necessitates a long resting period.  There are few days more thrilling than the first day of summer.

In our house, summer looks like an open stretch of road, full of possibilities.  It’s sunny and vibrant and beautiful and free.

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It doesn’t require an alarm to sound at 4:30 in the morning.  It doesn’t mean melting into bed at 7:30 or making a 5:30 am run to Walmart because there is no lunch food in the house and Momma’s gotta eat.   It’s getting up when the sun is already there to greet me and the ability to actually go for a walk.  It’s kiddie pools and backyard fires (with s’mores!) and playtime and fun… fun that doesn’t have to squeeze into a two-hour time frame before dinner and tubbie and bedtime.

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It means putting away the Snow Angel jammies (starting tonight.) and putting on flip flops and shorts and band-aids on skinned knees.  It’s summer.  It’s HERE!!!!!!!!!!!!

 

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5 months

Tessa has been five months for a little over a week.  I have not been putting off this update, I’ve have just been waiting for some calm so that I could get all the information in one post.

And then I realized that there is no calm and decided to write it anyway.

At four months, we decided to schedule her ear tube surgery and bronchoscopy.  Then, as is well documented on this blog, we had the pneumonia hospital visit and subsequent recovery.  Now, we wait.  Surgery is scheduled for June 5th, which puts it after school gets out (no time without pay, yay) and during the time that I was originally scheduled to travel to Costa Rica.  Clearly, God was keeping me back for a reason.

Here is where we are at in terms of therapy:

Physical Therapy

Tessa is a rock star on her tummy.  She is right at her age with her “tummy skills.”  She is still wearing kinesio tape to help activate her muscles.  I still think the idea of tape on the belly is kind of bizarre, but we’re going with it.  She’s slightly more delayed with her sitting skills (about a month).  We have had the chance to break out the Bumbo seat and while she can’t last it in for a long period of time, she does kind of like to see the world from a new perspective.

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The therapist has recommended using cabinet liner to help stabilize her when she sits in the Bumbo or when we do “couch sitting,” which is when she sits using the corner of a couch for support.  Creative, cheap, useful… It works.

Tessa’s new strange habit is this loud groaning sound that she makes regularly while tensing up all of her muscles.  We’re glad that she’s practicing using the “right” muscles (the ones that flex), but the groan kind of freaks people out.  My theory is that she just likes to hear her own voice (just like her mother).

Speech Therapy

Upright feeding is going great, hurray!!  We are at a point where anyone who wants to can give her a bottle and that makes me a very happy momma.  The next step is building up her core and mouth muscles to prep for solids.  We hope to start with some cereals this summer, but need to make sure that her body is ready for the different textures.  We do mouth stretches with her and use a little tool that looks like of like a solid straw with ridges on it to massage her gums and tongue.  I’m happy with her progress here, but curious to see if the bronchoscopy will reveal anything interesting going on inside her throat.

Here, you can see how happy Tessa is to have to sit at the dinner table, but not get any cupcakes:

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Developmental Therapy

So we’re seeing some more pronounced delays here, but the victory is that progress is happening.  Tessa loves people.  All people.  All faces.  All toys with faces.  But things without faces?  Not so much.  She is reaching, which is good, but we need to get her hands to open up a little more.  She can’t interact until she gets motivated to grab at things and explore, so the new development in developmental therapy is that it’s time to call in occupational therapy.

Sorry, that was a lot of terms.

Basically, Tessa’s occupation is to play, so we need to make sure she can do that effectively.  We are going to get her started with some occupational therapy to help this progress… because while Ellie is a great example for Tessa, she does a lot more toy-swiping than toy-giving.

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(this is the best of my failed attempt at a cute picture of these three)

Overall, we are joyful at the growth in both of our girls, prayerfully optimistic that surgery will go well, and ecstatic that our summer is finally here.  Just three more days of class for me, another week for John and we will have lots of this…

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and this…

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and hopefully not so much of this… but I had to send some love to my husband (and dad) for fixing my car…

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Welcome back summer, we’ve missed you.

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How Daddy Got His Fish Back

Neither John or I are very into swimming.  This is why we were hesitantly delighted to find that Ellie adored the water.  She would never learn to swim from either of her parents, but lessons!  There could be lessons!  The girl with two left feet could be an athlete!  And in high school, the meets would be inside where I wouldn’t have to be cold or stand in the rain!  And then she could be the next Missy Franklin!  Olympics, here we come!

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All of our hopes and dreams came crashing down about three months ago when Ellie decided that she loathed taking baths.  Loathed isn’t even a strong enough word.  Even hearing the word “bath” sent her into a terrible sobbing, screaming fit.  For awhile, I just forced it.  She’ll get over it, right?  Suck it up, kid.  No tears in this house.

It was (very) unsuccessful.

So, just like any rational parent, I decided to consult my dear friend, Dr. Google.

And then I started reading a lot of psychologists who said that the worst thing you can do is to forge through and make the kid “suck it up.”  Oops.  Another parenting fail.  But when your child has hair down to their butt, bathing really isn’t an option.  So I tried to make it more “fun!”  I tried getting her into the big whirlpool tub with the jets (major, MAJOR mistake).  We tried putting on swim suits and getting in with her. We tried sitting in the tub and letting her bathe us.  We tried letting her take a bath in Tessa’s infant tub (now that was ridiculous).  There were toys, so many toys.  Old turtle rattles, new little boats picked out just for tub time, tub crayons, squirty little octopuses… those made the fits worse.  She feared the drain and that all of us were going down into it.

This has not been the most joyful phase of my parenting career.

I write to you today with a new perspective, having traveled back from the Hell of Bathphobia.  Here’s how:

1.  We invested in some Crayola Color Drops AKA: Magic Protector Pills (Some parents frown upon the idea of imaginary sprays and potions.  Desperation will change that perspective).  Somehow, choosing the color of the bath made it less scary.  We had just read Pinkalicious, so in a pink bath, we pretended to be the main character.  I was still in the tub with her, but there were no tears.

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2. To get me out of the tub, we started making lists.  I have no idea where this idea came from, but suddenly, a list made the whole situation bearable.  Just before the bath, we write out all the steps together:

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Then, while the bath is going on, we cross them out.

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We practice numbers, we are cheerful, I am not in the tub.  It is glorious.

Don’t ask me why this works for her.  I think it might be because she knows that she will survive The Drain because there is a next step.  All I know is that if you find yourself in the middle of a torturous tub tantrum, a list might be your key to freedom.  At the very least, it’s a tool to try.

The Fish is back, just in time for summer.  And in plenty of time to train for the 2028 Olympics.  I can already smell the gold…

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Imagination

Ellie lives in her own little world and we are just characters in the game. Lord help you if you wake her up from her occasional nap and call her Dora on a day when she is actually Doc McStuffins. I found myself in that situation late this afternoon.

It wasn’t pretty.

With no TV to distract us these days and John working late coaching track, Tessa and I have been at the mercy of Ellie’s imaginary play. Today, we were Doc McStuffins. Or, to be more specific, Ellie was Doc, Tessa was Stuffy (a goofy blue dinosaur), and I was Hallie (a chubby purple hippo with a southern accent. Lucky me!).

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Tessa isn’t quite sure what just happened to her, but she’s glad it’s over. 🙂 (These last two pics were just too cute not to post!)

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The Back Row

My goodness, I love graduation. My squirrelly little freshmen who can’t sit still in Spanish One morph into goofy sophomores and sarcastic juniors and then suddenly they are walking back to their folding chair on the football field, diploma in hand, beaming like they won the lottery.

Every kid smiles at graduation. Every. Single. One. It’s lovely.

My charges were a group of 13 students, 10 boys and three girls (the kind of male/female ratio that I seem to be handed very frequently these days). We were the second-to-last row. I knew most of them pretty well. As we sat in the line-up room, they were sassy, but fun.

“Why can’t I have my cell phone? I want a selfie with the principal.”

“What if I trip on purpose? What if we all do? That’d be awesome.”

“Is this gonna take forever? I’m so done with this school.”

By the end, they were jubilant yet reserved. Sad it was over, thrilled at their accomplishment.

I love graduation.

Still, the ceremony tugged at my heartstrings more than usual this year. Because here I sat, in the second-to-last row, and quietly observed the back row… the row where our “Vocational Ed” Special Needs students were grouped together with their aides. The row where every child in the graduating class with Down syndrome was seated.

Not my child.

Most schools don’t seem to do Inclusion well… especially not high schools. We aren’t near school-age yet with Tessa and yet I already feel like I’m suiting up for battle with an education system that I am a part of. At the same time, I’m really annoyed. Annoyed that I have to suit up. Annoyed that in order for Tessa to have the same access to education that Ellie will get with no question, I have to fight people. That’s obnoxious.

Thankfully, I’ve never minded being a trailblazer for things I believe in. I’ve got some years to build up my armor and I’ll be ready.

Nobody puts my baby in a corner… or a back row… unless, of course, her alphabetical seat assignment puts her there.

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Flip Flops

One thing that I have noticed now, as the mom of a child with special needs, is the tummy flip-flops.

You know how sometimes, people say things or do things that cause a split second, literal gut reaction?  Like when you see a cup of water about to fall over and you get a little flutter?  Well, that happens to me more often now than it used to.  A lot more.  And for the silliest stuff.

Take for example, the palm-reading infographic that I came across on my Pinterest board today.  I was looking through my pins for something related to animals to use with my Spanish 2 kids and found this:

Leer la mano: A fun activity for practicing descriptions! (tiempo presente) (ser) - Activity description in blog post

You don’t have to know Spanish to tell that it’s a “cheat sheet” to reading a palm… which is something I don’t believe in anyway… but that’s beside the point.  So, I’m looking at this infographic and suddenly, I remember Tessa’s straight little palmar crease (the marker that I studied and studied in the NICU) and I get a little flutter that says “Hey!  Her palm is different!  She probably can’t get her palm read!  Can she??”  And it’s not a good or bad or sad reaction, it just is.  

Here are some other flip-flop moments:

-Listening to a mom tell me that her child would never get into college if she wasn’t selected for National Honor Society

-Any time I walk past a Special Ed teacher or the Vocational Ed classrooms

-Checking the “disabled” box for Tessa on our insurance forms

-Hearing kids called each other “dumb” or “stupid”

-Any mention of college savings plans.

Is this crazy??  A part of me thinks that I might be crazy, but the more rational side says that there is no way I’m alone in these sudden changes in perspective.  I’m not bogged down by the feelings, they don’t upset me at all.  They are just… there.  Kind of like Down syndrome.  It just is.

But if anyone else wants to tell me that they deal with the same thing, I’d love to hear about it.  😉

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Special Needs Mom Law #2

So I guess I fit into the category of a Special Needs Mom now, though I’m not exactly sure what that means.  So much of Tessa’s care seems similar to Ellie’s.  Slower, perhaps, but the same.  

Nevermind that whole week we just spent in the PICU, of course.

Still, after I told you all about my fear of Mom Jeans, I’m trying to put some goals in writing to maintain…  maintain what?  I don’t know.  But as my blog friend Jill (and fellow Ds momma) put it, we are trying to avoid being those unfashionably fiery and crazy Special Needs Moms in our nightmares.  I’m pretty sure that fiery and crazy is gonna happen sometimes, but we plan to do it without looking and feeling like a wreck. 🙂

My Special Needs Mom Law #1 is “Put your own oxygen mask on first.”  Thanks to Beth, our NICU social worker for that one.  No mom jeans allowed.  No laundry on a Friday Night unless we’re going on vacation the next day.  My Law #2 is “Celebrate the typical children, too.”

My Ellie Bean is bright and fun and fabulous… and she does some really awesome things!  I fear minimizing her accomplishments because I know that Tessa’s won’t come as easily.  But I need her to feel important, special, and loved just as much as her sister.  And so I present to you Ellie’s milestone of the week:

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That’s her name!!  She can write her name!!  We had been playing a lot with the Writing Wizard iPhone app, but I had not seen her skills transferred to paper.  My mom showed me that she could write the letters with a marker last week, but I really needed to see it for myself.  So we pulled out her little whiteboard this morning and she showed me.  I’m so proud.  🙂

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Priorities

Do you know what I’m really afraid of?

Mom jeans.

High waisted to hold in the leftover baby pooch, slim around the ankles with white tennis shoes. Or, Heaven forbid, the “capri” variety with socks and a pair of New Balance….

No. Not a good look. For anyone.

I know, I know, I’ve probably offended someone out there who loves their mom jeans. Or maybe someone doesn’t care about how they look and thinks I’m silly for even going there.

It’s not about the jeans, though. Not exactly. It’s more about me. Not my body (thank you, Weight Watchers app for checking in again today after my week from Hell. No, I’m still not going to weigh myself), not my fashion, just me.

The back story is this: Long before we even thought about Tessa, I began planning a student trip to Costa Rica with some colleagues. When we set our June, 2014 travel date, John and I were planning to have our second child about a year before the trip.

We all know how much God loves our plans.

Instead of our April 2013 baby, we got Tessa in late December. And cautiously, John agreed that she would be old enough in June for him to take care of both girls on his own for nine full days.

Flash forward to now, about a month before departure, and I had to back out of the trip. Aside from the financial aspect, there was a strong feeling that until Tessa is just a little healthier, stronger, more self sufficient, I need to be available… at least in the same country.

I am totally at peace with this decision. Of course, who doesn’t want to go gallivanting around a beautiful, exotic cloud forest, even if it is with a bunch of 17-year-olds?? Sad, yes, but I know this is best for us and what we can afford financially and emotionally. But it has me thinking about the “mom jeans.”

Because what if this snowballs? “No trip” turns into putting off a manicure or not getting Happy Hour wine with a friend so that I can be home with the kids… Then I stop putting on make-up every day and hair styling becomes a distant memory and then all the sudden I’m sitting on the couch in my mom jeans and old Kelly Clarkson t-shirt watching Shark Tank on a Friday night and I’m planning my weekend of chores instead of going on a date with my husband or taking a bubble bath.

It’s not the mom jeans. It’s the idea of life in mom jeans. It’s the idea of not taking a hour in the evening to read a book or catch up on Sister Wives… Or not finding a way to prioritize my own exercise routine…. Or not having enough energy to make sure that I haven’t created some awful outfit combination of stripes and polka dots while getting ready for work. That is my fear. Of not “putting on my oxygen mask first” like our NICU social worker used to always tell us.

John says the transition from zero kids to one was way more difficult than one to two. I beg to differ.

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Home

We are home. 🙂

It has been 24 hours since we returned. Everyone under one roof.
Everyone (mostly) healthy.

We are so thankful for our nurses – Aida, Sheila, Jodi, Mary Ellen, and most especially, Jan. Jan, who was no-nonsense but lovingly devoted to taking care of our girl, who didn’t give anyone any chance to feel sorry for themselves, who calmed our nerves and got us home as fast as she could.

Here is life back to normal:

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On Words, take 2

Tessa is doing much better. She is not home yet, but will be soon.

This story is not about that.

Today, as I signed myself out of the Pediatrics ward, three nurses (none of whom were actually looking after Tessa) were discussing genetic testing.

Nurse #1: Well, my sister is having the tests. She’s older… She just wants to know.
Nurse #2: Yeah, I get that. I just didn’t.
Nurse #3: Well, I couldn’t have a kid like that. That’s just too much. I’m definitely testing someday.

This isn’t a piece about whether I’m for or against testing. It’s not about my feelings about abortion. It’s not meant to be religious or preachy… But it is a little bit about hurt feelings.

So to Nurse #3, a medical professional taking care of sick kids like mine, I just want to say the following:

Hey! Those “kids like that??” The ones you don’t want or can’t deal with? My baby, the one in room three that all you nurses oooh and aaah over… well, she is one of those kids. And I get it, Special Needs are challenging and overwhelming. But look around you. You are a nurse, frequently taking care of children like mine, and I can hear you. I can hear you saying that you’d rather not have a baby than have one like mine. And it hurts my feelings. Not because I think you are a bad person, but because you are caring for my child and you’ve put her into a box of unmanageable people. So please, when you decide to tell the world, in a giant open room filled with strangers, that you can’t deal with kids like mine, know that you are hurting a momma who believes very strongly that her child has a life worth living. You get an opinion. So do I. But a little caring and consideration for those who might have to hear you would go a long way. Because I was in a place I couldn’t leave. I couldn’t just switch to a different website or turn off the TV. Talk to your husband, your family, your girlfriends about it. Make your choice. But when you work, please be more sensitive. Because I love my girl. And I want the rest of the world to know that they can love her, too. She’s not “too much.” Just the way she is, she is perfect.

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