Yo soy La Lay

adventures in family, faith, and Down syndrome

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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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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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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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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Retreating

I told you, I had the most amazing weekend at the DSDN Rockin’ Mom Retreat.  It’s Tuesday and I’m home surrounded by the same old stressors, but I’m still riding the wave.  I feel lighter (trust me, I’m not); my mood has lifted.

Many at home have asked about my trip.  I want to tell them – but a small part of me panics just a little at the question.  It’s like that time was somehow sacred, like sharing our experience is somehow like telling a secret or sharing what happened in Vegas…  It’s nothing confidential, but my heart wonders if the magnitude of these connections is in any way relatable  to those who are asking.  

Two years ago, when I joined a DSDN Rockin’ Mom group, I ‘met’ a small group of moms with children around Tessa’s age. Meeting them in person is not something I thought, at the time, would ever happen. On Friday evening, as I made my way down to the conference room, I was a bundle of nerves. I wondered how I would insert myself into this gathering; after all, only two others from my original group would be present. But then one mom took me under her wing and helped me find a table… and a margarita. The moms at the table chattered away with me like we had known each other forever.  Not long afterward, I got to hug Brooke, whose son is Tessa’s long-lost partner-in-crime. They haven’t ever met, but I swear that they are yin and yang.  So too are Brooke and I actually.  It was so, so great to give her a real hug instead of a virtual one!!

We had the opportunity to listen to some phenomenal speakers who have paved the way for our own children to be included in their schools.  Sandra McElwee came from California to talk about Sean, then left so that she could attend the Emmy’s with him for Born This Way (which, if you haven’t heard, WON).  I will readily admit that I was too shy to say a word to her.  Yes, I was shy.  Her story was awesome.  We got to hear from Laura Buckner about creating a pathway for school inclusion – I furiously scribbled notes (pages of notes) while I listened to her, soaking in every tidbit that I could so that I could prepare for our own race.  And during our breakout sessions, I sat with a small group of writing mommas and Mardra Sikora, who is a published writer… and so is her son, Marcus, who has Down syndrome.  My take-aways from Mardra were to write often, to write with a purpose, and to write my own story, not that which I think others want to hear. There was more… so much more, from each of these ladies and others.

At meal times and in the evening, we bonded over wine and stories of our families and lives. There were no filters, no apologies, no need to explain the nuances of life in our homes.  We processed through the words of the speakers, grappling with choices about schooling, and therapy, and holding our children accountable.  We listened to each other talk about the struggles that we are facing with services or schools, but also shared in the great joys and successes of our kiddos.

On Saturday we went to a Biker Bar (which was supposedly not a biker bar… Yeah, right) and that’s all that needs to be said about that.  Sorry to the poor teenager who decided to venture out in a unicorn costume… I guarantee that she had no idea what was coming when she made that wardrobe choice!  

(I can also pretty much guarantee that her dad will never let her in public dressed like that again for fear of another swarm of unexplainably-overexcited moms mobbing his daughter.)

My alarm went off too early on Sunday and it was off to the airport.  Sitting with my book and hot coffee, I was approached by a woman who told me that she had written some of the Chicken Soup books.  She asked me about my a World Down Syndrome Day shirt and my daughter.  She said she normally sells skin care products, but not to me because I was glowing… and asked for my blog because she said she thought my story was a good one and that I seem grounded.  I share this because “glowing” and “grounded” are not words that I would have used to describe myself anytime in the past 12 months… But two nights in Dallas with 120 Rockin’ Moms will do that to you.

We are the lucky few.

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Home again, home again.

I’m soaking in the last few minutes of solitude.  Through a series of events, it happened that I ended up checked in for my flight and at the gate about three hours early.  And it’s good.  Good people watching, good decompressing, good reflection.

It was such a great weekend.  I’m tired and ready to come home to my loves, but wow.  This trip was exactly what I needed.

Texas is big and flat and though I barely saw anything while I was here, it’s now officially on my list of places that I actually do want to visit.  I don’t think I met an unkind person while I was here.  I didn’t venture off the hotel property much, but enough to feel welcome and loved on by all the Texans I met.

I didn’t come to this retreat with any burning questions, but I have left with answers to questions I didn’t even know I had.

It’s amazing how quickly the awkward “I know you online but who are you?” faded into easy conversation with what felt like old friends.  Wine helped with that, but so did the feeling that these women, they are my people, my tribe.  There were laughs and wows! and ‘hey, I totally get you’ moments… Kleenex boxes at the tables wiped away good, cleansing tears and we just enjoyed each other for 48 hours.  

I’m excited to come home.  I’m tired, but refreshed.  I’m reflective, but forward-thinking.  I’m ready to put my nose to the ground and do the work.

So, so good.


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Leaving on a jet plane

Texas was never on my short list of “Places I would like to travel,” at least until about 6 months ago.  Too hot, too big, too Red, too many steak houses where they give you a prize for eating a whole cow.

But then the Down Syndrome Diagnosis Network announced that the 2016 conference would be in Dallas.  And I missed the last one and sure as heck wasn’t going to do that again.  So Texas, yay!

(Hopefully they don’t check my voter registration card at the gate… Or they might not let me in!)

I’m going to spend the next 48 hours or so with 120 strangers, sort of.  Actually they are friends.  Stranger friends.  Online stranger friends.

Is the this 21st Century or what??

So I’m sitting an airport, sipping a hot coffee and eating the best muffin I have ever eaten.  I’m so excited.  And I miss my little family.  I’m amazed at the whole world that has opened up through because of a wee little choromosome.  I’m so thankful for this chance to refresh and recharge.

So very thankful.

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Ten… A developing story

This is my tenth year teaching.

I need to let that sink in a little bit.  It overwhelms me.  No, seriously.  I said it out loud today and I didn’t believe myself.  So I counted on my fingers to make sure.

I’m sure.  (Big gulp)

People who have taught longer than me will tell me that time flies, the years go faster, yadda yadda.  I know, ok?  I know.  It’s like telling a pregnant lady that if she thinks she is tired now, just wait until the baby comes.  

Some things are better left unsaid.

In my role as a division head, I only teach one class.  I spent the past two years working in our program for very academically at-risk students.  This year, I get to teach a class of Spanish again.  And so, on top of my minor freak-out about this being my TENTH year, I am also freaking out that holy cow, I have to remember how to teach Spanish.  I feel ready, but… I don’t know, nervous!

The first day of school is my absolute favorite.  I love the rush of the new kiddos, finding lockers, lost little freshmen, sharpening pencils, new outfits, old friends… It makes my heart swell every. time.  A year fresh and full of possibilities – it is the best.  And those nerves…. a thousand little butterflies ready to soar.

This year, I have been reflecting on where I will focus my energy, about how I will continue to develop in my roles in the building, but also in life in general.  It’s so funny, it’s like this new house has brought a sense of settling to life – things are still chaotic and ever-changing, but it feels stable, like I can breathe and think and do.

Part of my nerves, and oddly, part of my settling, is a song lyric that has been stuck in my brain for about two weeks now.  I think about it over and over, and then I pray about it, and wrestle with what it might mean.  I can’t get it out.  And with my tenth year gearing up to go, it just repeats and repeats…

“Every time somebody lives to serve and not be served…”

That’s it.

The message is clear as a bell.  There is no denying that.  How that serving looks in my world gives me much to consider, and certainly reflection on those times when I am living to be served merit reflection as well.  I can easily point to the others around me who I feel are demanding to be served, but this isn’t about them – it’s about me, and about a lyric that, in this tenth year, when life would seem to be settled, somehow is my driving force for change.

Go.

Do.

Try.

Help.

Love.

Live to serve and not be served.

This is a developing story.  More from the field as it becomes available.

To listen to the full song from which this lyric comes, see below:

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Making “Home”

Remember that we bought this house?

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I’ve been really wanting to give you a tour since we got ourselves settled in!  I put it off, hoping to have it “all done”  before I shared pictures, but let’s be honest… is our home ever really going to be all done?  I’m settling for all clean.

(And by all clean, I actually mean picked up enough that the junk can be easily moved to another room while I take a picture of this one.)

(Which is also why this tour will only include our main floor.  You’ll have to wait in suspense for our upper and lower levels.)

That’s our front yard, by the way.  We just cut a bunch of branches off our mostly-dead pine tree by the front window, with the plans to turn that spot into a little sitting area.  We live on a great corner with lots of passersby and since I love people-watching, I want a place to sit and enjoy the neighborhood.

Here’s the front entryway and stairs:

My mom bought me the two blue framed pictures to the right of the doorway a few years ago on a trip to Branson, Missouri.  I have been waiting since then to find a place for them in my home.  I love them here, and I love that whenever I see them, I think of her and I, poking around in old antique stores in 100 degree Missouri heat.

When you enter, this is  our main living space.  My plan is to add an area rug and some artwork on the walls.  This room also features one of my most favorite parts of the home, our bay window.  These pictures cannot do it justice – since I am not a photographer and have zero ability with any kind of editing software, imagine the most perfect lighting in the world and apply it to these pictures.  It’s gorgeous.

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Here’s our itty bitty dining area.  We bought this table with a bench seat so that it can be pushed in during the day when not in use – it’s perfect for us.  We can actually seat six fairly comfortably.  For gatherings, we aren’t really “sit down dinner party” kind of people, more like paper-plates-on-laps-in-the-yard, so this wasn’t a vital area in terms of space for us.  Still, it’s cozy, sweet, and perfect for our family meals.

Our kitchen isn’t huge, but I love it.  In truth, its size gives me a great excuse to banish my children to their playroom while I cook at night.  When I let him, John sits at the table and chats with me while I make dinner.  Most of the time, I kick him out too and enjoy 30 minutes of solitude.

Here’s the hallway from the living room/kitchen to the two bedrooms and bathroom on the main floor, as well as the door to the basement:

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I love bright and bold colors. So, while I will tell you that the downstairs bathroom was decorated “for the girls,” I will readily admit that if I lived alone, my bathroom would still look like this.  Both of our bathrooms are adorned with photos from my time abroad – this one features mi lindo Ecuador, one of my most favorite places in the world.

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The girls have been thrilled to have their own playroom, I’m sure just as much as I am.  I know this goes against what is popular right now, but once I had children, I really disliked the open floor plan that we had in our townhome.  Our family functions so much better in closed spaces, where messes are contained and I only have to clean a couple of rooms for the therapists instead of the whole house every day. 🙂

We had originally painted the kid’s bedroom in our old home with neutral colors, since the gender of each of the girls was a surprise.  I was able to use the decor from their old room in the new playroom.  All that we are missing yet are a couple of bins by the small table for their art supplies and the word “PLAY” in big, yellow letters up on the wall.

The last space on this tour is My Room, or the spare bedroom, or the office, or Oma’s room, depending on who needs it.  I have labeled it My Room, as the girls have their playroom and John has the basement.  All have been warned that if they want to enter, they must ask, and that it is not a dumping ground for The Stuff That Doesn’t Have a Place… because in this house, if it doesn’t have a place, it goes bye-bye.

I’ve been saving old calendar pages from my favorite Anne Taintor calendars for years to hang on the wall.  You know, things like this:

Once I get the frames, I’ll put them up on the walls…  But even as is, this is my little comfort zone:

The last piece of something that hasn’t found a permanent home is this sign, purchased on Etsy when we first moved in.  I adore it, and I’m still thinking about where it will permanently hang in our home.

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We are so thankful for this little, yet huge house that we can call our home.  When we moved, I wrote about how happy we were, smushed into our old home.  And guess what?  We’re happy here, too.  It suits us, and our needs, and we couldn’t be more thrilled that the only home we looked at, the one that just popped into our lives on a whim one Saturday, is now etched into the story of our life.  Perfect. ❤

 

 

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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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