Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready, set, go… Year 3

31 days of blogging for Down syndrome awareness month…  on my iPhone.

Yikes.

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome.  Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies.  I have missed you too!  I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut.  There’s so much to say!!

Here we go!

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Winding up for the Wind-Down

Be still my heart.  As I stood in the kitchen making dinner, Tessa wandered in, no doubt looking for a snack.

“Momma?  Where Daddy, Lauren, and Ellie?”

It was clear as day, even the word “and.”  The question word “where,” the list of names… It makes everything worth it – every moment at home, being here as a family, adjusting to each other again, hammering through – worth it.

To be honest, there was a small amount of trepidation in the fact that we declined Extended School Year services.  My gut knew she didn’t need it, but with the exception of deciding to marry my husband, there hasn’t ever been a decision in my life that I haven’t over-evaluated.  So with this sweet little question, I feel vindicated.

This summer, we expected some chaos.  Add a new human to the house and there will be madness.  We did not expect the sleep study, or the ER visits for my gallstones, then subsequent hospital stay for the removal of my dead gallbladder, nor the Do-It-ASAP-Tonsil-Removal that so neatly wrapped up our summer of medical madness.

It could be so much worse.  It was enough, and we are tired, and Lord, it could be worse.

The tonsil surgery went well, all things considered.  There were some rough moments coming out of the anesthesia, and we are still struggling to get Tessa to accept her oral meds as easily as she once did.  Still, my own annoyance at watching Frozen and Moana on repeat 18 hours a day since last Thursday afternoon is really the only struggle that has come from the healing process thus far.  I have heard that days 7-10 can be awful, when the scabs fall off, but our ENT told us that she has “small stalks” on which her tonsils were growing, so the recovery shouldn’t be as bad as it could be.

So after all of this, we’re ready for some rest and quiet.  I’m heading to my DSDN Rockin’ Mom Retreat this coming Friday and it could not be coming at a better time.  Last year, I hopped on a plane and flew to Dallas for an amazing weekend connecting with other moms.  This year, the fun is coming to me in Chicago.  I spent a little time this afternoon reading through my blog post from last year about the trip and thinking about how fabulous I felt coming home from a weekend of connecting with these women.  I am so very ready for that feeling again, and feel pretty lucky to have the opportunity to go.  I’m terrified to be home on my own with all three children on my own, so I’m thankful that John is willing to be the first to try it – and I’m sure that after this weekend, I’ll owe him some time away as well. 🙂

I feel like there is so much to do between now and Friday when I leave school and head up to the retreat – packing and organizing, wrapping up loose ends at home so that things can be seamless here, planning in advance at work so that the Monday after the retreat is smooth-sailing… it’s a wind-up in order to wind down, but it is so worth it.  And since we’ve been on full-throttle for some time now, I’m not sure it will feel much different than how life just is for us in this season.  But the relaxation, the conversation, the unrushed breakfast and wine with friends… it’s coming.

Rockin’ Moms Retreat, let’s go!  ❤

 

 

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From one mom to another, thanks

To the mom I saw in Aldi,

Well, that was a little awkward, wasn’t it?

Truth be told, my family is a chaotic mess when we shop together.  We do it often, hoping it will get better as we practice.  So far, we haven’t much improved, but we keep charging through it anyway.  You had it together much more that we did, pushing your two little girls through the aisles.  We are a tornado… so it’s no wonder that your daughter noticed mine.  They may not look it, but they are probably the same age.

“Momma, look at that girl’s face!” she exclaimed.  You were very sweet in your response.  “Oh, isn’t she pretty?  She’s so cute.”  Your daughter persisted, and you stayed positive.  “She has such a pretty smile!”

I couldn’t look up at you at the moment.  I just grabbed my lunch meat and Kraft singles and hightailed it out of there, shouting to my husband to choose a Pinot Grigio and not a Chardonnay.

If you’re anything like me, you’re probably still thinking about today just a little bit, wondering if you handled our interaction well.  You might be thinking about your little girl, like I am mine, and hoping that you helped her see the beauty in what is different.

I wanted to thank you, to tell you that I appreciated that you didn’t scold your daughter for her statement.  She’s so young, and curious.  If I had been less frantic, and more brave, I would have smiled back and told her that Tessa looks a little different because she has Down syndrome.  And I would have told her that even though she looks different, she loves Moana and pink and Goldfish crackers, just like I bet she does.

I want you to know that it is OK for you to use the words “Down syndrome” to explain one of the things that makes our girl unique.  We don’t whisper those words in our house; Down syndrome doesn’t hurt our feelings.  And while it does not define who Tessa is, it certainly does help our little ones understand why she is a little bit different.

I’m sure we will cross paths again.  Our community is not large and Aldi is a pretty tiny little store.  When we do, I will be brave and thank you in person.  I hope you know how happy it made me to hear someone speak so sweetly about my daughter.  Not everyone sees what we see, and I thank you for that.  You’re doing a great job.

All the best,

Maggie



 

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My Beach Body

My Beach Body has stretched to grow three humans.  It has a hefty amount of stretch marks and a tummy that looks kind of like a deflated balloon.  It’s smushy and cozy and not on my list of “immediate concerns.”

At not-quite six weeks post-partum, my Beach Body is ready for the bathing suit I just bought to accommodate a pooch.  It is ready to splash in the pool with my girls and to enjoy a wine spritzer while lounging in an Adirondack chair and reading Rachael Ray magazine.

Next summer, my Beach Body will likely still need that same suit and that is OK.

You see, my Beach Body, which looks nothing like the Beach Body of my early 20s, is healthy and fulfilled.  It enjoys a lean protein and vegetables for lunch and dinner, but also the chocolate that follows once the kids are in bed.  My Beach Body now is not longing to fit the size 4 wedding dress stashed in my daughters’ dress up bin.  It isn’t even reminiscing about all the size 6 pants that I donated when Tessa was born.  It thinks a little about the 8s and 10s that are in the back of the closet, but is comfortable in maternity shorts and size 12 for now.

Twice a week, sometimes more, my Beach Body takes a walk around the neighborhood, all by itself, and truthfully, rocks out to those boy bands from the early 2000s that I still can’t quite get enough of.  It doesn’t go quickly, or break into a jog, but it moves.  It shows my girls that they can take a moment to breathe, to be in solitude, and to step away from the world’s chaos for 30 minutes.

My Beach Body wants my precious girls to know that they can go to a birthday party and enjoy a piece of cake.  It walks those girls to the ice cream stand down the street and does not feel guilty about a chocolate-dipped cone with sprinkles.  It doesn’t need wraps (thanks no thanks, random Facebook acquaintance that I haven’t spoken to in 10 years) or shakes.  It doesn’t believe in cheat days, but in moderation.  It feels balanced.  Chubby and healthy and balanced.

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Jump!

So many things…. let’s start here today:

For as strong a gross motor allergy as Tessa has, her desire to be able to jump has always been high – so high that I’d rank it right up there with “eating all the donuts” and “figuring out how to open the front door.”  We signed her up for Karate with Ellie through our park district.  At the end of class, when they would practice by jumping from one mat to the next, a small part of me was so sad to see her crouch down, expecting to jump like her peers, only to need the support of her aide and teacher to be lifted up across the divide.

Unlike me, it never got her down.  She developed her own methods, popping up from her crouch and raising up on her toes as high as she could, or dropping to her knees and pretending to be a frog.  She laughed gleefully each time she attempted to get airborne.

I hadn’t thought about jumping for a little while.  School is out for the summer and we declined Extended School Year services for Tessa.  In a nutshell, this means a summer without therapy.  She gets activity in through Karate and swim lessons – and life with her big sister is pretty much a 24/7 speech therapy session. Mostly though, we’re taking it easy.

And then this:

Did you see those sweet little toesies get airborne?!?

We work so hard for progress in every area, and she is making it.  Sometimes though, it just takes a little step back on our own part and letting her figure it out.  And when she does, well, it’s got us all jumping for joy. ❤️

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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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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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Dear Tessa

Dear Tessa,

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

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

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

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

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

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

Girlfriend, I adore you.

Wuv yeeeewwww!

Mommy


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#DearDoctor

Dear Amanda,

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

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

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

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

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

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

Thank you,

Maggie

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

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

 


 

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