Yo soy La Lay

adventures in family, faith, and Down syndrome

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.

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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 Unsuspecting Mall Walkers

Dear Unsuspecting Mall Walkers,

I’m sure you enjoy your mall walks on Saturday mornings. ¬†You go early enough in the day that you can avoid the crowds of strollers, the throngs of people out to see the Craft Fair in the center of the mall or the raucous teenagers causing disturbances as they navigate their awkward relationships and newfound freedom to explore.

We headed to the mall early this morning, too.  The early rain foiled our plans to head out to a local pumpkin farm but by 9:00, the children just needed to be out of the house.  Hoping to avoid spending money to do anything, we made the decision to get Tessa some practice in her walker at the local mall.

Looking back, this was a terrible decision.

I should have known this when one of the following things happened before we left:

  1. Ellie started complaining of a headache, which always means that she is about to get some sort of illness.
  2. Tessa unrolled an entire roll of toilet paper and threw it into the (running) shower.
  3. I put on skinny jeans.

Normally, we keep a tall bar on the back of the walker that allows us to grab hold of our speed demon when she takes off.  Today, we did not have it.

Today, we should have had it.

So to all of you unsuspecting mall walkers, who got to mix up your workout routine to dodge and weave while she careened around corners and at times, beelined right toward to you as fast as she could so that she wouldn’t miss a chance to say hello… well, I’m sorry.

And to you, shop owners, who were busy setting up for your day when a loud almost-three-year-old showed up in your store¬†and shouted “HI!” to all your unsuspecting customers (actually, #sorrynotsorry for this one).

But especially to you, Man Who She Tried To Follow into the Bathroom.

Yes, that happened.

We stayed for precisely 22 minutes, 14 of which were spent trying to convince Tessa to walk out of the building, ultimately throwing her angry little body over my shoulder while John carried the giant walker and the wilting five-year-old back to the car.  Once we had exited, we paused to reshuffle children and equipment and suddenly there was vomit on my shoes from the now completely wilted Ellie and John and I just laughed because what the hell were we thinking in the first place??

So, sorry. ¬†I can’t promise we won’t be back anytime soon because community integration and stuff, but hey, at least we’ll put the bar on the back of the walker and try to control the chaos just a little bit.

Most sincerely,

A Tired Mom of Two Wild Children.

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This is part of the 31 for 21 Blog Challenge ‚Äď 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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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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Zoo Day, Take 3

Sitting in my new writing space, I’m watching the last of our summer sunshine slip through the treetops. ¬†I went back to work last week, but tomorrow, all of our teachers report. ¬†The girls will go back to their Mimi Daycare. ¬†John will be up and dressed in the morning. ¬†Our routine will begin to settle in.

Our annual¬†traditions have come and gone for the year, but as I wrap up the loose ends of a summer vacation, I realized that I didn’t write down enough of those moments. ¬†After all, I write so that my girls can remember – when I don’t write, they have to rely on my poor photography skills and fuzzy memory to piece together their childhood.

So I write.

Ellie and I had our annual Zoo Day much earlier this summer. ¬†Although, it’s worth noting that the traditional date, which is the day after I finish my school year, flew by without our normal outing. ¬†At the end of the school year, I had a brief bout of food poisoning, and we moved, and I had to hire some positions unexpectedly… and soon it was mid-June with no Zoo trip. ¬†So Ellie stomped into the kitchen, grabbed a permanent marker, and scrawled “ZOO DAY” on the calendar.

How does one argue with permanent marker in almost five-year-old handwriting?

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It’s funny, I don’t know if it is just because she has grown so much over the last year, or if it was timing, or just me, but this trip felt so different for me than in the past. ¬†In year one, she was still in a stroller and pull-ups; year two brought an obsession with zebras and the bathrooms. This year, she wanted two things: Dippin’ Dots and a ride on the trolley.

She loves to get a zoo map and navigates through the zoo like any good tourist would do:

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By far, her favorite animal is still the zebra…

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But she also got a great kick out of the river otters this year.  She even picked out a river otter toy from the gift shop this year.  She lingered longer at each exhibit, too.  Since she can now read, she took great joy in examining the placards in front of each animal.  Things that she was once scared of, no longer made her panic.  I, the proud mother, happily snapped pictures of my brave girl, conquering the dreaded kangaroo pouch, the swamp, and that silly bird house.

We took our annual selfie on the trolley…

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And she made point to stand in every. single. one. of these look-through thingies (do they have a name???):

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I made her wait until the end of the day to get her Dippin’ Dots, even though she complained pretty much every five minutes until she got them. ¬†We sat alongside the big fountain this year. ¬†She enjoyed watching the people go by, and even made a new little friend with the girl sitting by her family eating Dippin’ Dots across the way.

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Our Zoo Days are usually long – with a breakfast and several hours wandering the familiar paths. ¬†This year, she had her fill in about two hours. ¬†After that, she asked to go back home to Daddy and Tessa. ¬†Our stop at the gift shop this year though, was considerably more difficult. ¬†She is a thoughtful little lady, and after much deliberation over which item Daddy would most like to display on his desk at school, she settled on this keeper of a mug that I know John can’t wait to show off to his colleagues:

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(She doesn’t need to know that I had to dig it out of the back of our tupperware cabinet just to take this picture.)

A little older, a little calmer, a lot of sweet memories made with my sweet-ish girl. ¬†Who knows how many more years of zoo days I can talk her in to, so I will continue to soak in every one. ūüôā

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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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