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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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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Dear Ellie

Dear Munchie,

This is a picture of you at your Big Sister class, before Tessa was born:


We couldn’t tell that day if you were ticked off that you were getting a sibling, or if you were insulted that we thought you needed to learn anything about taking care of babies.  From the get-go, you told everyone who would listen that it was a girl baby in Mommy’s belly and that a boy simply was not a possibility.  Thank goodness you were right.  You are not so easily convinced of the things that you do not believe to be true.

For example, when we ask you about Down syndrome and what might be different about Tessa, your only answer is that she has more strings than you do.  You seem to not notice the little differences that set her apart – and when other kids point out her braces or her walker, I love how you so matter-of-factly say “well she just has them.”  Like duh, of course she does.  Why wouldn’t she?

The child who asked us about medical marijuana because she heard it on the radio, and who is surrounded by talk of therapists and doctors and IEP goals, has no reason to believe that Tessa is any different than anyone else.

I am so proud of the model you are for others by just playing with Tessa as you do any other child.  Sometimes you get mad at me when we treat her differently.  Like this morning when I told you to stop putting so many puzzle pieces in front of her because it was too overwhelming.  You just looked at me, then continued to stack them in front her. “It’s part of her lesson, Mom.”  Ok, little teacher.  Do your thing.

I don’t think we have to worry about you being your own person; you have already made it perfectly clear that you will be just who you want to be.  There was some very tiny fear in me when we first had Tessa that you might get swallowed up into a life that revolved around her needs.  However, that fear quickly vanished as Down syndrome has faded into the background and your (very large) personality has really taken center stage.  I think that in the ebb and flow of family life, you and she will alternate in the spotlight… and sometimes you’ll share it (in which case, we will be tired).   In any case, I’m so glad that you are you and she is she – you are the most darling little set of sisters… even when you fight.  I won’t ask you to do anything more for her than be yourself, but I have this feeling that your own heart will lead you to being a champion for her… and her for you, too.

I’m so proud of you.

Love,

Mom

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Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

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Dear Paul

A note from John tonight, written to Paul Daugherty.  Paul’s writing can be found at http://www.pdaugherty.com/.  His daughter, Jillian, and her husband just celebrated their first anniversary.

Dear Paul,

There’s a small moment I remember from my daughter’s birth.  My wife’s doctor was meeting with us a few hours after Tessa was born.  He was actually very reassuring in telling us that we could be optimistic about Tessa’s life and as he put it, “things are different for kids like this than they were years ago.”  I remember nodding in agreement without really agreeing; the feeling of uncertainty in my heart still unmoving.  At the end of our meeting he looked at me and and joked to ease the tension:

“Two daughters, huh?”

“Yeah”

He smiled.  “Two weddings then.”

“Yeah…I suppose”

My voice said one thing, but my heart said another.  Wedding? Tessa? Are you kidding? I was a bit put off by what I felt to be his ignorance and nonchalance in the matter.  Tessa wasn’t getting married.  

Well…as it turns out he wasn’t the one who was ignorant, it was me.  

I recently was given your book, An Uncomplicated Life, as a gift from my wife.  As I read it, I was struck by the parallels of our experiences. You were able to articulate much of what I felt when Tessa was born.  It was reassuring to know the thoughts I had, the fears I experienced, were not uncommon.  But, the longer I read, the more the tone of my thoughts changed from empathy to joy.  I was able to journey along with your family through school, relationships, college, even living independently.  Everything I read revised my expectations.  Your life with your daughter was filled with challenges and joy…which really is the same as any child isn’t it?  It was enlightening to realize what I had in store in the future.  As I read I became excited to watch Tessa grow, to cherish what the 47th chromosome adds to our lives, and to eventually let her go and join the world, just as you did with Jillian.  

As I come full circle here, I realize my vision for Tessa’s future in the beginning was short sighted.  I just didn’t know and at that point, I couldn’t see beyond my fear.  As my daughter is three now, she has changed that vision.  At such a young age she has taught me that the only limits that exist are the ones we set for ourselves.  Your story has validated this attitude and for that I appreciate you taking time to share your story with all of us.  I guess there’s only one takeaway:  I better be prepared emotionally for two weddings. 🙂

Sincerely,

John

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Dear Sarita

Dear Sarah,

Earlier this week, I texted you about your Myers Briggs personality type and, as I suspected, you and I are pretty close to polar opposites.  This is what I love so much about our friendship – we are so different and yet so very much the same.

As I said to John earlier this week, can you imagine if, on that first night at college so many years ago, we could have seen the twists and turns our lives have taken?

I want to thank you for being someone who has always stuck around.  I want you to know that not all of the friends that I have made in life have done that, so it means a lot to me.  One of the happiest days of my life was watching you marry Andy.  It was such a joy to see your heart so full, in love with a guy who is so perfect for you.  And I get as much joy from watching you be a mother to that sweet girl. 

I will always wish that we could live closer to each other, but am content to know that anytime we get together, we can pick up on wherever we left off.  Since you are the one who knows the most about my crazy life (and my real feelings about it) and you still like to hang out with me, I feel pretty lucky. 😊

BFFs 4 Lyfe!

Maggie

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Dear Jefe

Dear Jefe,

Well, this isn’t exactly what we had planned, is it?

Can you even imagine what the two of us would have done if we had seen our life at 31 when we were just college babies?  My goodness, we have come a long way.

It was always my intention to write this letter right away, and I’ve been starting it over and over for like 20 days now.  It’s just time.  So here goes:

I love that you were so jumbled up when Tessa first joined us.  I think it shows how much you really care about your children and their lives.

I love that you let her beat up on your treasured Taylor guitar.  It makes her so happy.

I love that you worry so much about Ellie finding her own way.  And when I tell Ellie that her college is already picked out, you are right there telling her that she can pick whatever school she wants… and also reminding me that maybe Tessa will be the one to go there instead.

I love that you still try to make sports be a bonding thing with the girls, even though after 5 years, Ellie still doesn’t even understand that the Cubs and the Bears play different sports.  She’s got a lot of me in her.  There’s still hope for converting Tessa.

I love that you will do “mom” things.  I want you to remember that you did say that you want to do PTO.  Just putting that out there.  On the internet.  So that we all know you said it.

😬

I love all the ways that you help me and our families.  I love that you do the tables at family parties and that you help me put the dang Christmas tree up when you would rather be doing 87 other things and that you bring me fresh ice water at night and all the other things.

And, because it’s 31 for 21, allow me to say this:  I love your advocacy.  I love your willingness to understand Tessa’s needs and to fight for her rights.  I know for certain that NO adult believes in her the way that you do.  I love that you are raising her to be as kind, polite, respectful, and helpful as we expect Ellie to be.  Thanks for the reminder that Tessa is so ready to have time outs and to use her words.

You are absolutely the best father that these girls could have.  And on top of that, you’re a rockin’ husband as well.  And while this letter isn’t nearly as witty or thought-provoking as I would have liked, thanks for being the kind of man who will love it anyway.

I am so thankful that you picked me and I, you.

Love,

Mags

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