Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Doctor Bowles

Dear Dr. Bowles,

You did not diagnose Tessa – that is another story for another person and another day.  However, you have been my OB/GYN for many years now and I was lucky enough to have Tessa on your watch.

My labor with her was quite quick, and as I recall, you were supposed to be off the clock about an hour before she was born, but you stuck around to see it through.

Much earlier in the pregnancy, when we discussed prenatal testing and I declined, you did not push.  And then later, when we had our 20 week ultrasound, as you read the results, I very distinctly remember the slightest furrow in your brow and asking again if we had prenatal testing.  At the time, it did not phase me, but when Tessa was born and she was diagnosed, I wonder if you might have had an inkling back on that day.

While the NICU team checked her out, you helped me finish laboring and chatted with me while we processed what was happening.  “Ya know, kiddo,” you said, “who is to say she’s not going to be just as happy as anyone else?”  And you went on to tell me a story about a family member who worked himself to the bone and then died within a week of retiring.

“She won’t do that, you know… she won’t work herself to the bone.  She’ll be happy.  You’ll be happy.” you told me.  We are happy.

I learned recently that you have retired.  I’m a little sad, because if there are any more babies, I will have to see some other doctor… but I’m also so happy for you, because you’re able to be out, enjoying life, happy as a clam with your family.  I hope you are soaking in every moment.  Congratulations!

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 Brooke

Dear Brooke,

I didn’t know if it was happening anywhere… and then I walked into your classroom.

Ceramics 1, Gen Ed Elective.

Fully including a handful of our students with the highest of needs.

I try to keep my own life from taking center stage in my career, but Girlfriend, my heart grew leaps and bounds that day.  This little group of students, who many would believe cannot learn at any sort of valuable level… these kids weren’t just sitting in the corner making pinch pots while their typical peers advanced through the art curriculum.

They were critiquing art.

This was the first time I had really seen a teacher at the high school level successful accommodate students with significant learning needs without watering down the content.  And with all your preps and coaching responsibilities and outside coursework on top of teaching, you still took the time to really think about how to serve these students in your classroom.  These kids were artists and critics and a part of the class like any other.

I think my favorite part of this observation was when we chatted afterwards and I told you how awesome you did with that group.  You were totally modest and actually a little perplexed as to why this would be so extraordinary.

Thanks for showing me how possible it is, and for being the first of many awesome teachers that I have had the chance to observe just being inclusive because duh, why wouldn’t we be? I’m so thankful to have you on our team.

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 Nieces and Nephews

To my darling nieces and nephews,

I really love being a mom… and probably equally as much, I love being your aunt!!  It makes me so happy to watch you all play and learn and grow.  This weekend, I got to see all eight of you and boy, it was so much fun!!

You are all so different and that is fun to watch.  You all love to play the things that are most exciting for you… and as I watched this weekend, I saw that you each play in your own special way.  Some of you are bossy, some of you are not.  Maybe you are quiet or silly or sweet or grumbly.  One or two of you like to play one-on-one, where you are alone with an adult or just one cousin.  Some others like to put on a show for everyone.  I know that some of you are starting to notice that Tessa is a little different than everyone, too.  She has some different things that she uses, like her leg braces or her walker.  Sometimes she says a lot of words to you but you can’t understand what she says.  Or she uses her hands for sign language.

All of you are growing fast fast fast, even Tessa.  It’s hard for her to walk or talk like you big kids, so I know you sometimes forget that she is not a baby.  I love when she plays with you!  I hope that when she sees you run, she’ll want to run too!  She learns a lot by watching what you do.  That doesn’t mean that you always have to be on your best behavior when you are around her (but you do have to be on your best behavior because your parents say so).

If you have questions about the things that she does, you can always ask me or Uncle Johnny.  What is most important is that you just keep playing with her like all the other kids.  She is a tough little girl, just like the rest of you, and she just wants to do the things that you do… it just takes her a little longer to learn how.

Love you guys!

Auntie Mags

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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 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 Kristina and Sarah

Dear Kristina and Sarah,

Thank you so much for visiting our home, listening to our story, and being part of a project that is open to changing the dialog about disability in the medical community.

(For readers who are “new” to Kristina and Sarah, these two ladies are a part of LEND, the University of Illinois at Chicago’s program for Leadership and Education in Neurodevelopmental and related Disabilities.  They came to our house last weekend to talk with us about how disability has impacted our family.  You can find out more about their project here.)

I’m sure you thought we might be a little crazy.  I’m sorry that my children pretty much force-fed you chips for two hours.  Thank you for patiently listening as Ellie read you 47 Strings.  It’s how she makes sense of Down syndrome right now,  and boy, I’m sure you can tell, she loves to have an audience.

(A reminder that you promised not to write about her offering you wine.  I’m still blushing.)

As I told you that evening, we believe that the type of advocacy that fits our family is telling people about our life – it’s one of the main reasons that I write in an open forum rather than in a personal journal.  I would love to think that we can change minds just by being out and about in the community, but I also know that almost three years ago, when I was sitting in my hospital room alone while my new baby slept down in the NICU, I craved information.  I needed to know what life would be like.  And I found that information by reading the stories that people had shared online.

We are so grateful to know that future medical professionals are willing to listen, learn, and be influenced by the voices of the self-advocates that meet with your group.  I appreciate that you listened to our story, and that you will have the opportunity to hear from so many others who walk parallel paths.  Certainly our story is not the single story that speaks for all those with disability.  But thank you for taking in our perspective, and for already making a difference in the lives of families, just by LENDing an ear.

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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Size Matters


(Ellie and Tessa in the same 4th of July outfit.  Ellie is one. Tessa is two and a half.)

Two and a half.

25 pounds soaking wet.

A little tiny package bursting with laughter and joy and sunshine.

Our park district has an amazing indoor play area where we like to bring the kids to get their energy out.  It’s huge, with oodles of slides and soft-cushioned obstacles to climb through and around. They have an area that is just for little ones and it is there that we like to let Tessa roam free and explore.  Mostly because it is caged and keeps her out of trouble. 🙂 

There are, of course, other children in the play area and I am so often amused when I see her surrounded by infants.  The sheer size of her peers is so markedly different.  And inevitably, another mom will come over to make conversation, hoping to commiserate on the exhaustion of having an infant in the house.

I wait for the question.  I know it’s coming because it always does.

“She’s so cute,” they say, “how old is she?”

“She’s two and a half.”

Inside, I cringe and wait for the response.  They vary, but usually it involves an effort to restrain eyes bugging out of their head and an oddly confused smile.  “Oooh,” they say, their eyes darting back and forth between my child and theirs, sizing up the differences.  Mostly, the conversation kind of dies.

One time, a mom literally asked me if I was sure.  She shared that her daughter is that same age and asked when her birthday is.  She thought I had miscalculated my own child’s age.

That was awkward.

A small part of me just wants to lie when I get asked.  Would it be any easier to just tell them she is 15 months or 18 or whatever number I feel like throwing out?  Maybe I’ll really wow them and say that she is 10 months.  That could be fun!

I think, as parents, we might all be happier if we could just stop asking each other how old our children are.  It does nothing good – just feeds into this urge to compare.  And what good are comparisons anyway?  One is potty trained, one isn’t. One is reading, one isn’t.  One is sitting or walking or talking or whatever.  Some are not.  They are not less.  Different, perhaps, but not less.

But more than that, I’m sad for the conversations that die out.  Our experiences are probably a little different in parenting, there’s no denying that.  But we can still share.  We are parents in the same community.  Our children will grow up near each other.   Commiseration gets us through some days!!  And even if my little one is on the scenic route, she’s headed in the same direction as all the other little ones – up, up, up.  I’m just a mom.  She is just a kid.  So let’s talk!


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The Walker

Ok, let me level with you here.

This is Tessa’s walker.


I hate it.

We have actually had it in our home for quite some time.  It largely sat unused for several weeks, a giant elephant in the corner, taunting us with it’s slick silver bars and fake leather arm support.

Have I mentioned that I hate it?

I hated her orthotics just as much at first, though now that hate has mellowed to a slow burning irritation.  I struggle quite deeply with the fact that her disability is worn on her face.  I know that there are equally as many drawbacks to having a disability that is not visible to any Joe Schmoe, but I wish that I knew that some people, some day, would pass her on the street and not just see Down syndrome.  When there is equipment, well, it just draws attention to her challenges.

In any case, we have the walker now and while I hate it, I have had to slowly come around because it is what she needs right now.  So much of parenting is reminding myself that it’s not about me; it’s about my children and their lives and doing what is best for them to grow strong and independent.  So while I may carry my own insecurities about people having pity on the girl with the walker, the more important cause is helping Tessa get up on her own two feet.

How challenging it is to see our children fight their own battles!!

The milestone of the day for us (me, really) was that we took the walker out of the house for the first time.  When Tessa’s therapists came, they suggested a session in the park a short walk from our house.  So off they went, and Tessa, strapped into her little walker, just raced along the path, shuffling her little feet as fast as she could.

She, the child who cried at the site of her walker just three weeks ago, went about a quarter mile – all the way to the park, actually.  She made it.

It’s not about me.  It’s not about the people who gawk as they drive by us peddling on down the road.  It’s about Tessa, and it’s about getting her wherever it is that she wants to go.

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Wait for it, wait for it…

I’m lounging in a little bucket chair, feet propped on a kitchen step stool.  I have placed a padded car seat headrest to support my throbbing feet.  There are boxes all over the living room, no furniture, but our TV is up and running on an old end table and I’ve got a tall glass of ice water keeping me (mostly) cool.  I have learned in the past few weeks that we are at a point in life where chaos does not suit us well.  Last week was an epic cluster of rushing around to do God-knows-what in preparation for 49 different line items that were a Very Big Deal.

In this very moment, I’m feeling like there’s no chance that we will catch a break and we’ll just keep barreling down the road toward losing it.

But.

In all of the crazy, there’s-so-much-I-can’t-even-make-a-list, what-the-heck-is-going-on???, there is also bright – a new, perfect home that is exactly what we need… two beautiful, healthy little ladies who, in the stress of all the change, still adore each other… our own, happy, loving marriage (about to celebrate seven years running).  Bright.


The days before my summer sets in are like this – this year more than years past simply because of the move (and the stomach flu, because why not?).  The long stretch is coming, the days of evening bonfires and the annual Mommy Ellie Zoo Trip and all the fun that is our favorite season will be here before I know it.  So for now, I’ll just seek out the small reminders of our blessings, knowing that the big, deep sigh of relief is just around the corner.

Summer….. Come on, summer!!

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The Tortoise and the Hare

Ellie is life in the fast lane.  Full on Autobahn, blink-and-you’ll-miss-it, one-stage-to-the-next kind of crazy.  She resisted some milestones, sure.  She waited to walk until the day before returning to daycare at 14 months.  She waited to potty train until the day before returning to daycare at just-over-three. But there has been no down time, no pause.  One day, she babbled, the next, full sentences. Seemingly overnight, she started reading.  We do not teach her these things, she is just a sponge, eager to fill with knowledge.  She learns independent of us.  We are just along for the ride through her life, holding onto the “oh shit” bar as she careens through each stage.

Tessa is the scenic route.  She is meandering through the hills and valleys, pausing to smell the wildflowers, nice and easy down the road.  We stop and look at the map frequently, making sure we stay on the course.  She gives us time to enjoy each phase.  She moves independently of us and the norms that others would deem appropriate.  We are along for the ride with her, too, basking in the sunlight in the backseat while she takes her own route.

Occasionally, my mind drifts to what a third child in our family could be like. Don’t get your hopes up, there are no plans right now. (We don’t seem to make plans anymore, as we know full well that our plans are small and God’s are greater).  I cannot wrap my head around a third – we have a tortoise and a hare, what next?  It’s just funny to ponder.

Free and easy down the road we go.  Kind of fast, kind of slow, but onward.  Always onward.

  

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Quiet

I have thirty minutes of complete and utter solitude right now.

This.  Never.  Happens.

I’m sitting in a rocker, in the sunlight, drinking a beer and listening to the sounds of birds and cars and the tick tick of the cuckoo clock across the room.  It is lovely.

(Of course, never mind that I gave up alcohol for Lent and it is Holy Week, which I am sure makes it worse.  Ellie tells me that God forgives and I believe her.)

Soon the children will be home and I’ll hear the stories of their day at Oma’s house.  We will be filled up with Ellie’s laughter and Tessa’s insistence for cookies (more cookies!!) and John’s chatter about his day.  It will be a different kind of wonderful.

But for now, this.

Quiet.

Calm.

Breathe.

Lovely.

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