Yo soy La Lay

adventures in family, faith, and Down syndrome

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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Dear 31 for 21 Blog Challenge

Dear 31 for 21 Blog Challenge,

By about this time of the month every time I do this, I’m drained.  You kick my butt every single year.  Not that we ever have a quiet month, but holy guacamole is October busy!!

The interesting thing about this part of the month is that while I’m limping toward the finish, I’m also freaking out a little on the inside about how I’m going to get it all in.  It’s a funny thing, this writing business.  The Type A in me sits down in late September and makes my list of topics… and then oh!  look!  wait!  no, that thing!

And I’m off track.

There are only 11 days left – and there are two already written and at least one more from John that he needs to write and the girls and my husband of course, but I’ve got a zillion others on my mind that I have to somehow fit in and like I said in the beginning, I’m not going to get them all.

That’s part of why I like you, Blog Challenge.  I love to write.  And you are like a little Personal Trainer for me, pushing me to get through and then then keeeeeep going.  I write because I think it’s so important to demystify our life for others.  But I also write because it’s good for my soul.  I’m allowed that one thing, aren’t I?  And when I stretch the writing muscle, I keep going.

So thank you, 31 for 21 Blog Challenge, for pushing me to pause and reflect, to center myself, and for giving me a chance to delve into some topics that are important to us.  Thanks for introducing me to so many other moms who write.  Their stories continue inspire ours.  I’m shaking my fist at you tonight, but kindly, because in truth, I am thankful that this Challenge exists to reignite my fire.

Best,

La Lay

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Dear Julie

Dear Julie,

Back when Ellie was a baby, we did not get off to a very good start with our in-home daycare experience.  Very thankfully, only months into her life, fate and a bunch of awesome family/friend connections brought us to you.

We know that  Ellie was a (generally pleasant) handful and you loved her for it.  I so appreciated having a friendship with you – my commute home was always a little longer than expected because we would chatter about the day while Ellie s l o w l y put her shoes on her little feet.

When Tessa was diagnosed, we were afraid of so many things.  One of our fears was that you might not be able to care for her.  We didn’t know how she would be, what her needs would be, or how you felt about the extra responsibilities of a child with special needs.  We ripped the bandaid off quickly, telling you almost right away about Down syndrome.

Of everyone we told, you had the best reaction of all.

Without even a second’s hesitation, you told us that you would love her just like you love all of the children you care for.  That was that.  And we couldn’t be more grateful for how you lived that statement for the rest of our time living in that area.

Our girls miss you.  They love going to Mimi’s house for daycare, but Ellie still talks all about her friends at Miss Julie’s house and how she is going to marry Aiden.  She even still takes care of her Michael’s stuffed animal.  She adored him!!!  I love seeing your family grow on Facebook.  You gave our girls such a wonderful start while John and I worked.  Thanks so much for being their daycare mommy.  We are so blessed to have been able to send our girls to you – thank you for just loving on Tessa like you do all the others.

Lots of love,

Maggie

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Dear Kellie

Dear Kellie,

(No, not you, Kelly.  That’s another post for another day. 🙂 )

In an odd coincidence, perhaps foreshadowing what was to come, on the day that my OB called to tell me that my HCG levels were rising nicely and that I could expect this pregnancy to continue, I spent the day with you.  Well before the words “Down syndrome” or “inclusion” or “least restrictive environment” were a part of my every day thoughts, before my life was catapulted in an entirely different direction, my task was to shadow you, an elementary school principal, so that I could learn about your position.

I had chosen your school because you had been highly recommended to me (one of the best, they told me) and because at the time, I knew that someday, Ellie and this little one growing in my belly, would walk the halls of your building as students.

I was nervous, having not stepped foot in an elementary building since I was a child myself.  But you were kind and helpful, welcoming me into your day and talking me through your usual schedule.

On the docket for our day was a family visit.  This new family had just moved into the district, you explained, and while they lived within the boundaries of this building, one of the children had a disability.  You explained to me that while the other two siblings would be able to attend your school, the littlest girl would need to be placed in another building, where children with her type of disability were housed, so that her needs could be met.  You and I would travel to the other building, meet with the parents and the other principal, tour that school, and our goal was to help the parent understand why his daughter could not attend her home school.  Her parents were pushing for her to stay at the home school, and in your words, that isn’t how things are done in your district.

I was floored.

Before I ever had Tessa, before I was as well-versed in the law as I am now, before this fight for inclusion had come the forefront of my mind, I knew this was wrong. I knew it.  I didn’t understand how this child could be separated, segregated, away from her family, away from her neighborhood.  At the time, I didn’t know enough to ask the right questions; I didn’t know to push you to think about this in a different way.  But I knew it was wrong.  And to be honest, I think you did, too.

It is because of this very day, that promptly after Tessa was born, we made a plan to move before she would go to school. My feelings on that day drive so much of what I do now.  I cannot even imagine how different that day could have been if I were to live it today.  Because today, I have a stronger voice, and I use it.  I wish, for that girl, on that day, I would have said something.  I suppose I can be thankful that God put me in that place, on that day, to prepare me to advocate in the future.  I understand that you have moved on from that building and pray that you are in a district that encourages you to promote education in the least restrictive environment for all students, as is required by law.  I pray that you no longer group students based on a diagnosis, and that you have grown in some small way to understand that segregation is wholly inappropriate for children to reach their potential.

All the best,

Maggie

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Dear Mom

 Dear Mom,

I’m not always sure that I can do this right, truth be told.  In my hardest days, I wonder too much if I’m making the right choices for both of these girls.

You believe in me.

Moments into our new reality, you were there, rooting for Tessa and us and the choices that we would make.  When the nurses told me that you had come, thinking that you would just be bringing John a sandwich and hunkering down to wait for Grandbaby #4, there was not a single hesitation in my mind about letting you into our odd little vortex right from the beginning.

When we asked you if we could move in with you and Dad so that we could provide a great educational experience for our children, you didn’t bat an eye.  You both took us in, with all of our mess and chaos and annoying habits.  You care for my girls, help Tessa with her therapies, and love fiercely on Ellie so that she never feels forgotten.

You learn with us and we are so thankful for that.  So many families don’t have the support that we have.  You are teaching others how to see our child as we see her, as just one of the members of the goofy little grandbaby clan.  You read books, you attend seminars and watch webinars.  You’re giving up an entire Saturday to attend a conference so that you, along with us, can help us provide Tessa with all that she needs to live her dreams.

Much earlier this year, your health concern rocked me.  My mind went wild, as all of ours did, and for days and days, I would spend my commute fighting back tears of worry that I would have to face all of the things, good and bad, without you.  I am so very thankful that you are here and that all is well.  I am thankful that my little ones have lots more chances for sleepovers and Mimi and Ellie Days and baking cookies and reading books… that they will get to feel all of the love that I have felt as your daughter for so many years.

I love you!!

Mags

PS – Good Lord, will there be a letter this month that I can get through without crying???  I’m not off to such a good start!

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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Ready to write 

The only way that I can really describe our last two weeks is that we are careening wildly into October.  Think big minivan speeding around the corner, precariously tipped on the two side wheels, while the driver wills the giant piece of machinery to correct itself before it tips.

Yup.

One sick parent, one messy house, two worn out kids, work chaos, meeting chaos, life chaos.  Someone send over some chocolate.  And wine.  Or maybe it’s more time to break out the tequila!!

But what else is new?

Saturday begins Down Syndrome Awareness Month.  While the rest of the world goes pink for Breast Cancer, we’ll sport our blue and yellow instead.  If you’ve been around for a little while, you know that in October, I participate in the 31 for 21 Blog Challenge.  For the past two years, I wrote a post every day in October.  This year, I’m taking part again.

In year one, we wrote about 31 things that we learned since we had Tessa.  In year two, it was 31 ways to advocate.  For year three, I’ll be writing 31 open letters to people who have somehow impacted our life since December of 2013.  I’ve been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign, in which parents are sharing letters that they have written to the individuals who delivered the initial diagnosis of Down syndrome.  I’ll be posting one of those as well, along with 30 other letters throughout the month.

I am going to miss someone.  I know I will, it’s inevitable and I apologize in advance, whoever you are.  Honestly, with this focus, forgetting someone is my biggest fear because I don’t want to hurt any feelings.  But this is where my heart is calling me this month.  I hope you’ll join us.

Who’s ready for October??

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Making “Home”

Remember that we bought this house?

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I’ve been really wanting to give you a tour since we got ourselves settled in!  I put it off, hoping to have it “all done”  before I shared pictures, but let’s be honest… is our home ever really going to be all done?  I’m settling for all clean.

(And by all clean, I actually mean picked up enough that the junk can be easily moved to another room while I take a picture of this one.)

(Which is also why this tour will only include our main floor.  You’ll have to wait in suspense for our upper and lower levels.)

That’s our front yard, by the way.  We just cut a bunch of branches off our mostly-dead pine tree by the front window, with the plans to turn that spot into a little sitting area.  We live on a great corner with lots of passersby and since I love people-watching, I want a place to sit and enjoy the neighborhood.

Here’s the front entryway and stairs:

My mom bought me the two blue framed pictures to the right of the doorway a few years ago on a trip to Branson, Missouri.  I have been waiting since then to find a place for them in my home.  I love them here, and I love that whenever I see them, I think of her and I, poking around in old antique stores in 100 degree Missouri heat.

When you enter, this is  our main living space.  My plan is to add an area rug and some artwork on the walls.  This room also features one of my most favorite parts of the home, our bay window.  These pictures cannot do it justice – since I am not a photographer and have zero ability with any kind of editing software, imagine the most perfect lighting in the world and apply it to these pictures.  It’s gorgeous.

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Here’s our itty bitty dining area.  We bought this table with a bench seat so that it can be pushed in during the day when not in use – it’s perfect for us.  We can actually seat six fairly comfortably.  For gatherings, we aren’t really “sit down dinner party” kind of people, more like paper-plates-on-laps-in-the-yard, so this wasn’t a vital area in terms of space for us.  Still, it’s cozy, sweet, and perfect for our family meals.

Our kitchen isn’t huge, but I love it.  In truth, its size gives me a great excuse to banish my children to their playroom while I cook at night.  When I let him, John sits at the table and chats with me while I make dinner.  Most of the time, I kick him out too and enjoy 30 minutes of solitude.

Here’s the hallway from the living room/kitchen to the two bedrooms and bathroom on the main floor, as well as the door to the basement:

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I love bright and bold colors. So, while I will tell you that the downstairs bathroom was decorated “for the girls,” I will readily admit that if I lived alone, my bathroom would still look like this.  Both of our bathrooms are adorned with photos from my time abroad – this one features mi lindo Ecuador, one of my most favorite places in the world.

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The girls have been thrilled to have their own playroom, I’m sure just as much as I am.  I know this goes against what is popular right now, but once I had children, I really disliked the open floor plan that we had in our townhome.  Our family functions so much better in closed spaces, where messes are contained and I only have to clean a couple of rooms for the therapists instead of the whole house every day. 🙂

We had originally painted the kid’s bedroom in our old home with neutral colors, since the gender of each of the girls was a surprise.  I was able to use the decor from their old room in the new playroom.  All that we are missing yet are a couple of bins by the small table for their art supplies and the word “PLAY” in big, yellow letters up on the wall.

The last space on this tour is My Room, or the spare bedroom, or the office, or Oma’s room, depending on who needs it.  I have labeled it My Room, as the girls have their playroom and John has the basement.  All have been warned that if they want to enter, they must ask, and that it is not a dumping ground for The Stuff That Doesn’t Have a Place… because in this house, if it doesn’t have a place, it goes bye-bye.

I’ve been saving old calendar pages from my favorite Anne Taintor calendars for years to hang on the wall.  You know, things like this:

Once I get the frames, I’ll put them up on the walls…  But even as is, this is my little comfort zone:

The last piece of something that hasn’t found a permanent home is this sign, purchased on Etsy when we first moved in.  I adore it, and I’m still thinking about where it will permanently hang in our home.

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We are so thankful for this little, yet huge house that we can call our home.  When we moved, I wrote about how happy we were, smushed into our old home.  And guess what?  We’re happy here, too.  It suits us, and our needs, and we couldn’t be more thrilled that the only home we looked at, the one that just popped into our lives on a whim one Saturday, is now etched into the story of our life.  Perfect. ❤

 

 

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