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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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.

ūüė¨

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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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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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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Advocacy #3: Give us a smile

con·spic·u·ous

k…ônňąspikyoÕěo…ôs/

adjective

1. standing out so as to be clearly visible.

2. attracting notice or attention.

synonyms: easily seen, clear, visible, noticeable, discernible, perceptible, detectable; person with Down syndrome

^

That’s reality right now. ¬†Not that everyone in the room notices us, but that everyone in the room who does¬†notice us can see that we are different.

We have run the gamut of responses to Down syndrome (remember this guy??).  Not all responses are negative.  Most, in fact, are quite benign, even a little sweet.  And they bring me to another little way that you can advocate for people with Down syndrome: smile.

Smile at everyone you meet on the street. ¬†Good or bad, rich or poor, sick, healthy, clean, dirty, happy or sad. ¬†A smile says “Hey, I see you, human being.” ¬†I’m not saying you should fawn over every individual that crosses your path, nor should you go out of your way to grin awkwardly at someone who is different. ¬†I’m saying that it is pretty cool if you let your eyes meet someone else’s (anyone else’s)¬†and allow yourself to smile. ¬†And though you may think it far-fetched, it’s advocacy at its finest.

You see, when you share a smile with the differently-abled, the marginalized, those on the outskirts, it’s not really about them, it’s about the others in the room. ¬†It’s about showing the world that it’s cool to be cool with everyone. ¬†When you treat everyone who looks a little different with the same dignity and respect as you would that nice-looking, decently dressed human being walking toward you in the grocery store, it sends a message.

We are all humans. ¬†Advocate for the humans by smiling kindly at the humans. ¬†You can’t go wrong with that.

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Electric Fingers and a call to deep kindness

Sometimes, time passes between posts and I can barely feel it.  Life heads full speed ahead and there’s no time for reflection or much thought at all really.  Writing, my vital outlet, is shoved into some back corner of my life, jammed in between long discarded hobbies like getting manicures and scrapbooking.

But on other occasions, I feel the distance between my schedule and the thoughts rolling around in my brain.  There’s an electricity in my fingers, an itch to sit in front of a screen and get the words out, but sweet time escapes me at every turn.

This is why, at 11 pm while my family is well off on their nightly journey in the Land of Nod, I’m tossing and turning.  The weeks since my last post, while not overwhelmingly interesting to any outside reader, have been powerful.  In the clearing out of our first home and subsequent return to the home of my adolescence, self-reflection has been running rampant in my brain.  Maybe it is just the big, gulping breath of the freedom of summer, maybe it is all of the transitions happening to me and around me, but I seem to be stuck on ensuring that I am being the best that I can be for my husband, my children, my family, my coworkers, my world… and a disappointing feeling that I am not sure if I have done this well in most recent times.

This morning in church, our pastor gave a phenomenal message about the spiritual importance of kindness.  While I spent so much of his sermon wrangling a squirmy and overtired 4-year-old, I desperately clung to the words he shared, feeling as if God had put me into that pew for a real reason today.  I have written much about being kind and try to live it when I can, but I wonder if I have truly accepted the call to love thy neighbor… all of thy neighbors… and to show kindness to all, even the ones who challenge me or grate on my nerves at every turn.

The greatness of God’s grace is that we can fall short in the task of caring for our fellow man and still feel His love and acceptance.  But this kind of deep kindness that has been on my mind today is the core of what I’m asking the world to do for my own child – to love her, unconditionally, without doing so out of guilt or charity.  Have I done this as often as the opportunity has arisen?  Even with those who challenge every moral fiber of my being?  And if I have not been able to do so myself, how can I ask it of anyone else? 

Deep kindness in action.  Be the hands and feet of God.  Go to it.

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Rattled.

The man seemed nice enough while we were waiting for the elevator.  He was clearly a pharmaceutical rep, wandering around the medical offices, selling his wares.  He asked Ellie her name and, miracle of miracles, she shared it without bursting into tears.

As we entered the elevator, he furrowed his brow and said, “I don’t mean to be forward, but does she have…. problems?”

Oh Lordy.

“Oh!” I replied, “She has Down syndrome.”

“Well, that’s just… I mean, two people… You are normal, no issues, it isn’t right that you would have something like that.”

You son of a bitch.

Grace, my brain told me, give him grace. ¬†He doesn’t know. ¬†He cannot know.

“We love it!” I exclaimed, probably a little too brightly. ¬†Tessa burst into tears. ¬†He was quite clearly baffled and muttered something about how she’ll never be…. ¬†and then he stopped. ¬†I continued to put on the cheerleader face and explained to him about how we have high hopes for her and the therapy and she is doing great.

The man literally ran off the elevator when the doors opened.

This is what I don’t understand: ¬†Why is it acceptable to put any child into a box marked¬†undesirable? ¬†Why assume that anyone, but most especially an 18-month-old baby, is completely incapable of a valuable life? ¬†And why the hell does it matter if she ends up smart¬†or high-functioning or¬†independent?? ¬†She very well might, but really, if she is happy… and believe me, she’s happy… I care about nothing else.

I live in an ivory tower of sorts, with loving supportive family and friends who genuinely follow our lead when it comes to raising our little lady.  If they feel anything to the contrary, we are blissfully unaware.  The crushing reality of how others around us perceive this life, just for tonight, has knocked me to my knees.

But just for tonight.

Tomorrow, the work continues. ¬†Tomorrow, fresh-faced and perhaps well-rested, we carry on with the hope of acceptance and of inclusion and of love. ¬†My prayer tonight is that he, that unsuspecting man in the elevator, is as rattled as I am. ¬†I pray that we opened his mind and¬†heart¬†just a little bit. ¬†I pray that Ellie remembers her mom’s response more than his words to me. ¬†And I pray that somehow, we have made a little tiny difference.

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3 Decades

A very special kind of countdown has started and I’m super excited about it!

(No, Mom and Mom-in-Law, I’m not pregnant.)

Today, I am celebrating the beginning of my 144-day “make fun of John because he is 30” extravaganza. ¬†I only get 144 days because of course, then I¬†will¬†be 30 also. ¬†But for now…. let the fun begin. ¬†ūüôā

As I’m sitting here, he is telling me that he does not want a post in celebration of his birthday… which is fine, because this isn’t about that…. it’s just about him. ¬†I have done exactly what he told me. ¬†ūüėČ

I had to laugh today, going through old pictures of him, because I was trying to find just one to share here in celebration of him. ¬†it’s impossible. ¬†I don’t know if there is just one picture that can really embody his accomplishments, his determination to provide for his family, his devotion to us and to the girls and to God. ¬†This is a remarkable man. ¬†And for all of the amazing things that he has worked so hard to provide for us, these are the things¬†that I love the most:

photo 2 (2)IMG_5741 IMG_4123 IMG_3973 IMG_4434 IMG_3607 IMG_4345 IMG_0574 IMG_5973

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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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November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club. ¬†He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG ¬† ¬† Tessa loves to play “sooooo big!” IMG_6706.JPG ¬† We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG ¬† Sticking out our tongues in solidarity with Tessa ūüôā IMG_6766.JPG ¬† So serious today…¬† IMG_6762.JPG ¬† A little happier in this one. ¬†ūüôā IMG_6734.JPG ¬† The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG ¬† We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG ¬† Holding her own bottle is super hard work!! IMG_6776.JPG¬†¬†Sister love. ‚̧

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