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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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 Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings.  You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry.  I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

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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 Self Advocates

Dear Self Advocates,

I am so thankful for your voices.

While I love to read blogs written by the mothers and fathers of children with disabilities, it is your words that matter the most to me, your words that hit home.

There are more individuals living with disability who are sharing their stories than I could possibly list here.  However, Aubsome Aubrey, Anonymously Autistic, Tim Harris, the cast of Born This Way, and @djmpoweraz (instagram), you all give me a perspective that I could never get from just reading the stories of parents.

No one person can give the single story of what it is like to live with Down syndrome or Autism or CP or any other disability.  Collectively, your perspectives matter.  I thank you for being willing to share – because it helps me think about the decisions I make for Tessa so that she can be her best self.  Your stories give me pause; they open the eyes of the public to your joys and successes, as well as your trials and fears.  They teach us more about how to treat one another.

I hope you’ll keep writing or vloging or speaking or instagramming, or whatever medium you choose to be your megaphone.  You are making a difference in the lives of families by using your voice and our little ones will be better for the stories that you share.

Thank you so much for sharing,

Tessa’s Mom

 

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Dear Blog Readers, Part 1

Dear Blog Readers,

Thanks for understanding that we love to be out and about loving life.  As such, tonight’s post is a short one.  More to come soon.  For now, I’m just happy you are here.

Hugs,

Maggie

A little cuteness to tide you over until tomorrow…




 

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 Well-Meaning Friends who recommend the “other” stuff

Dear Well-Meaning Friends who recommend the Other Stuff,

I understand your sentiment, and I appreciate your thought, I really do.  There isn’t a week that goes by that we aren’t informed of something special just for Tessa and “kids like her.”  There’s a new church group just for kids with disabilities… there’s a program at the local dance studio for “special” little dancers… try out these new play groups, too!!

Sigh.

I get that these programs make places seem welcoming, and that to you, it feels like they are doing a good thing for the community.  It’s an effort made, and I really do understand the draw.  However, my perspective is a little different.  You see, to me, the notion that we need something special and separate is a tough pill to swallow.  As someone on the newer side of special needs, I can very distinctly remember recoiling in shock the first time someone suggested a special place for our special child.  I’m sure I smiled and nodded, probably said thank you so much, but in my brain, this:

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Is this me living in denial?  I don’t know why it has to be called that.  I don’t know why it makes people more comfortable to include by exclusion.  Because to me, that’s what special programs are all about.  They tells us that Tessa can’t be as good as the other kids, or can’t handle the speed of the program, or can’t be accommodated.

We don’t much like the word can’t in our house, most especially without trying it first.  So please excuse us while we insert ourselves into your regular community.   Thank you for your offer of a special opportunity, but for now, I think we will pass.  This might be uncomfortable, for us and for you.  Maybe I just hope it’s uncomfortable in that good way that means that all of us are growing and learning.  Because growing and learning is what we’re all about around here.

Thanks for your consideration,

Maggie

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 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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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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