Yo soy La Lay

adventures in family, faith, and Down syndrome

Incomprehensible

This morning, with her little button nose smushed up as close to me as she could get, Tessa sang me a song.  I couldn’t understand the words, but her smile told me it was a sweet one.

My day has been filled with moments that I want to freeze in my memory.  Like for many around me, it is hard to digest all that has happened this week.  I find my breath catching in my chest as I soak in the calm breeze in my backyard, or my sweet five-year-old chattering with a robin outside her window.  

We have so much.

I did not wake to the news of Dallas this morning.  Before the national news, another devastating headline about a former student crossed my feed.  He, a troubled child, too adult before he was ready, sat in my study hall not too many years ago and dared me to attempt to control him.

I won him over, quickly, with patience and Jolly Ranchers.

I never found anger to be a useful tool, nor lectures.  I don’t know that either can help a person gain perspective or bring warring sides together.  But a show of love to the unkind, the hurt, the confused – that has seemed to build bridges, at least in my life.

Just a couple months ago, that student crossed my path again, sitting in the office of our building, inquiring about how he might be able to finish his high school degree.  

He had been through so much.  Made so many bad choices.  An adolescent with a brain that did not work like an adult’s, thrown into Big, Heavy situations long before his mind could control his body as he needed it to.

I do not know what chance he will have to finish now.  We could not save him.

Today I have soaked in every little privilege that my life circumstance has afforded me – the pile of books on the playroom floor, which my girls have been raised to love, the box of chocolate from my loving and devoted husband, fresh, clean clothes and our own laundry machine in the basement.  Clean water, clean home, stability, resources, safety, education, love.

We have so much.

I can’t imagine the lives of those who do not live as I do, but I understand that by pure chance, it has been different. And so I learn as much as I can.  I pray and try to be kind and gentle.  I don’t know what else to do.  I don’t know what words to say.  I don’t know how to stop the hurt.

This morning, Tessa sang me a song.  Her sweet words were incomprehensible, but beautiful nonetheless.

We have so much.

Someday I will understand.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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MLK Jr.

Darkness-cannot-drive-out-darkness

Let us not forget light and love…

Light and love.

We have a duty to make things better during our time on this earth.

For better or worse, you can choose how you will fight your battles.

I choose love.

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On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up.  She spent awhile telling me that she felt like she just can’t learn.  And then she told me this…

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People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited.  Sometimes it is.  Still, we can very simply explain and correct.  When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me.  Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them.  Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

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Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

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If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.”  I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this.  In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.”  Um.  Thank God I am not the person that I was when I was 17.  Seriously.  With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles.  Grow.  Learn.  Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her.  She doesn’t have to perform any great miracles or bust through any stereotypes.  But maybe, just maybe, she will teach someone how to love.  Maybe someone will connect with her in a way that will open their heart to more patience or acceptance.  Maybe her smile will make a difference on a bitter day.  Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook.  Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

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Lesson #27: Great nurses rock our world.

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU.  They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient.  Theresa was outgoing and athletic.  Tessa has been our little scooter/swimmer/mover since long before she was born.  These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding 

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Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home.  I told her about our family and Ellie’s crazy antics.  She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two.  She encouraged me to take breaks to enjoy my older daughter.  At times, there may have been a few tears, but goodness, did we laugh!!  On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down.  We got a lot of “looks.”

Totally worth it.

She was exactly what I needed.  Theresa loved my little girl immediately.  She forced no unsettling stereotypes on us.  She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged.  We all cried.

Home at last…

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Jan was a different kind of perfect nurse.

In April, I was frustrated.  Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful.  😉

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When Jan was assigned to Tessa, I was a little worried.  She was no-nonsense.  She was pushy.  She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity.  There was no woe-is-me.  We were to get the baby well and get on it with.  Jan was caring and compassionate, but she was on a mission to get our girl discharged.  And so we did.

Freedom!!

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We are so fortunate to have been under the care of these amazing women.  While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

 

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Lesson #7: Tessa makes some people uncomfortable

This is part of the 31 for 21 Blog Challenge!

I will preface all of this by saying that the vast, vast majority of people that we interact with make no issue of Down syndrome.  As a matter of fact, we haven’t had a single person express anything other than complete joy about our baby girl and her extra chromosome (at least to our face).  However, it is also not lost on me that there are a couple of people in my life who have literally dropped off the face of the earth since Tessa was born.

We are proud of Tessa and we will bring her into the community and show her off.  She will participate in all of the activities that she wants to and sometimes she’ll do things differently than other kids.  She will go to Chili’s for dinner with us.  She will putz around at the zoo.  She will sit restlessly through church.  She will go Trick or Treating for Halloween and we’ll take her to the Chicago to see the Christmas trees at the Museum of Science and Industry.  She will look different and probably sound different doing all of those things and we are just fine with that.

We know that others are not.

We know that sometimes people will stare because they don’t know what else to do.  Or sometimes, they will refuse to meet our glances because they think that somehow, that’s better for everyone.  Someday, someone will be impatient with her and will grow angry with her slow and steady pace.  I cannot always save her from those people.

I will not be surprised the day that I get a call from the principal saying that Ellie has punched some snot-faced boy in the nose for calling Tessa the r-word.

This is also part of our reality.  It’s a part that we are trying to change, or at least minimize, but we know it’s there.  I know that there are people who are uncomfortable with the differences that Tessa represents.  It’s kind of sad.

To the former friends who have since left, we truly wish you all the best.  Mostly, we hope that someday, you will open your heart to experience the light and love that Tessa brings to our world.  It’s amazing.

And, for the record, the day that I get the call from Ellie’s principal, she is most certainly gonna be in trouble.

Free Printable scripture art.

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On Language

Words are so powerful.  The problem is that words are also so tricky.

My life’s work is teaching students how to use new words to express themselves… to get what they need, to make a new friend, to experience the world differently.  The excitement of a student on a Monday morning who used Spanish to order in a restaurant on Saturday afternoon is beautiful.  16 year old teenagers beam from ear to ear as they tell me about how they understood someone in the checkout line at Jewel.  And I beam right back.   

One of the difficulties in teaching language is helping my students understand the differences in culture that can evoke strong emotion when a word is used incorrectly.  As a study abroad student in Ecuador, I lived with an absolutely wonderful family.  Toward the end of my stay with them, my host brother commented on how my host sister and I were similar.  He said that she and I are very intelligent, but like to have fun.  Trying to agree with him by saying that we are both kind of silly, I used the word “estupida” to describe my host sister and I.  Now, my Profe Junkroski taught me better than that back in my first year of Spanish, but in my rush to get my feelings out, I used a word that carries a much stronger meaning in Spanish than what I wanted to convey.  Her face flushed, as did mine…  it was painful and awkward.   

This is what happens when someone uses the word “retard” or any of its various forms.  

Let’s not mince words here.  The fact of the matter is that my child will most likely be mild to moderately mentally retarded.  That is an accepted and appropriate way for a professional to refer to her slower-than-typical cognitive function.  But it is not a word that is used to describe her as a person, nor is it appropriate for describing a mistake, or a rule that one might find bothersome.  It does not describe a friend who has done something silly, nor any other person or experience that is disagreeable.

You see, context is the tricky part of language.  And even the most mundane of words that we chose can evoke strong feelings in those around us.  Don’t believe me?  Say the word “mom” in front of someone who has just lost their mother or “pregnant” around someone who is struggling to conceive a child.  Don’t care?  That’s very sad and unfortunate for you.  

The reality is that we do not know the intricacies of the minds of those around us.  The joyful thing about language is that we have lots of words to use!  I’m not suggesting that one must avoid any and all words that could possibly evoke a negative reaction.  That is just impossible and quite unnecessary.  Again however, the word “retard” is only an appropriate way for a professional to refer to someone’s slower-than-typical cognitive function, and even there it is falling out of favor.  And rather than using the word “retard,” there are so many other ways to express ourselves that won’t turn the insides of our fellow human beings into knots.

When I called my host sister stupid, she and my host brother very graciously explained that the word I was looking for was “tonta,” with a meaning more similar to silly, which is what I actually meant.  If you hear the “r” word, might it be possible for you to do the same?

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