Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Paul

A note from John tonight, written to Paul Daugherty.  Paul’s writing can be found at http://www.pdaugherty.com/.  His daughter, Jillian, and her husband just celebrated their first anniversary.

Dear Paul,

There’s a small moment I remember from my daughter’s birth.  My wife’s doctor was meeting with us a few hours after Tessa was born.  He was actually very reassuring in telling us that we could be optimistic about Tessa’s life and as he put it, “things are different for kids like this than they were years ago.”  I remember nodding in agreement without really agreeing; the feeling of uncertainty in my heart still unmoving.  At the end of our meeting he looked at me and and joked to ease the tension:

“Two daughters, huh?”

“Yeah”

He smiled.  “Two weddings then.”

“Yeah…I suppose”

My voice said one thing, but my heart said another.  Wedding? Tessa? Are you kidding? I was a bit put off by what I felt to be his ignorance and nonchalance in the matter.  Tessa wasn’t getting married.  

Well…as it turns out he wasn’t the one who was ignorant, it was me.  

I recently was given your book, An Uncomplicated Life, as a gift from my wife.  As I read it, I was struck by the parallels of our experiences. You were able to articulate much of what I felt when Tessa was born.  It was reassuring to know the thoughts I had, the fears I experienced, were not uncommon.  But, the longer I read, the more the tone of my thoughts changed from empathy to joy.  I was able to journey along with your family through school, relationships, college, even living independently.  Everything I read revised my expectations.  Your life with your daughter was filled with challenges and joy…which really is the same as any child isn’t it?  It was enlightening to realize what I had in store in the future.  As I read I became excited to watch Tessa grow, to cherish what the 47th chromosome adds to our lives, and to eventually let her go and join the world, just as you did with Jillian.  

As I come full circle here, I realize my vision for Tessa’s future in the beginning was short sighted.  I just didn’t know and at that point, I couldn’t see beyond my fear.  As my daughter is three now, she has changed that vision.  At such a young age she has taught me that the only limits that exist are the ones we set for ourselves.  Your story has validated this attitude and for that I appreciate you taking time to share your story with all of us.  I guess there’s only one takeaway:  I better be prepared emotionally for two weddings. 🙂

Sincerely,

John

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Dear Sarita

Dear Sarah,

Earlier this week, I texted you about your Myers Briggs personality type and, as I suspected, you and I are pretty close to polar opposites.  This is what I love so much about our friendship – we are so different and yet so very much the same.

As I said to John earlier this week, can you imagine if, on that first night at college so many years ago, we could have seen the twists and turns our lives have taken?

I want to thank you for being someone who has always stuck around.  I want you to know that not all of the friends that I have made in life have done that, so it means a lot to me.  One of the happiest days of my life was watching you marry Andy.  It was such a joy to see your heart so full, in love with a guy who is so perfect for you.  And I get as much joy from watching you be a mother to that sweet girl. 

I will always wish that we could live closer to each other, but am content to know that anytime we get together, we can pick up on wherever we left off.  Since you are the one who knows the most about my crazy life (and my real feelings about it) and you still like to hang out with me, I feel pretty lucky. 😊

BFFs 4 Lyfe!

Maggie

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Dear Blog Readers, Take 3

Dearest Readers,

It’s Friday.  You know the drill.  I’m tired.  Go Cubs.  See you tomorrow!

Mags

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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.

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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 31 for 21 Blog Challenge

Dear 31 for 21 Blog Challenge,

By about this time of the month every time I do this, I’m drained.  You kick my butt every single year.  Not that we ever have a quiet month, but holy guacamole is October busy!!

The interesting thing about this part of the month is that while I’m limping toward the finish, I’m also freaking out a little on the inside about how I’m going to get it all in.  It’s a funny thing, this writing business.  The Type A in me sits down in late September and makes my list of topics… and then oh!  look!  wait!  no, that thing!

And I’m off track.

There are only 11 days left – and there are two already written and at least one more from John that he needs to write and the girls and my husband of course, but I’ve got a zillion others on my mind that I have to somehow fit in and like I said in the beginning, I’m not going to get them all.

That’s part of why I like you, Blog Challenge.  I love to write.  And you are like a little Personal Trainer for me, pushing me to get through and then then keeeeeep going.  I write because I think it’s so important to demystify our life for others.  But I also write because it’s good for my soul.  I’m allowed that one thing, aren’t I?  And when I stretch the writing muscle, I keep going.

So thank you, 31 for 21 Blog Challenge, for pushing me to pause and reflect, to center myself, and for giving me a chance to delve into some topics that are important to us.  Thanks for introducing me to so many other moms who write.  Their stories continue inspire ours.  I’m shaking my fist at you tonight, but kindly, because in truth, I am thankful that this Challenge exists to reignite my fire.

Best,

La Lay

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Dear Future Mom

All,

I have a meeting tonight, so someone else’s words will have to suffice.  If you haven’t seen this, I hope you enjoy.  If you have, it’s always a joy to re-watch.

Maggie

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Dear Kim and Karli

Dear Kim and Karli,

This afternoon, when we attempted to get Tessa to walk across the room, she turned to John and said “No Daddy, stop it.” Clear as a bell.  I’m sure I’m supposed to be annoyed by this, but I bet you can guess that we just burst out laughing because it was a speech victory in our minds!

Later, Little Miss Carnivore asked us to take away her half-eaten brownie and for us to give her more broccoli.  We worked for so long on getting her to eat a real fruit or vegetable and look at her now, preferring the broccoli!  

We owe so much of what she can do to the two of you.  She has come so far… from that little lump of a baby who took an hour to drink a bottle while laying on her side to now happily joining in our full family mealtime, veggies and all.  She is going to start preschool with lots of words and signs to communicate her needs.  And she’s going to rock it!

Neither one of you have ever used the word “can’t,” nor have you ever predicted anything about her based on Down syndrome.  You have never told us that she just does something because of her diagnosis.  You have treated her as Tessa, a little girl with as much potential as anyone else.

We are so blessed to have worked with both of you.  Thanks for giving us so many tools to help our girl, and for being so supportive of our family.  I know that Tessa put you both through the ringer sometimes… especially you, Karli, once we put “persistence through non-preferred tasks” into her ISFP.  LOL!  I know she can be quite the character during her sessions. You both have just been lovely to spend time with.  The new littles that you work with are so lucky to have you.

Thanks so much for everything,

Maggie

Normal (messy) family meal time….

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Dear Theresa

Dear Theresa,

As a NICU nurse, I bet you meet a lot of families like us.  Your primary job is to treat the patient, I know, but I bet you help a lot with the whole family’s emotional healing, too.  You did with us, that’s for sure.

The very hardest part of Tessa’s NICU stay, truthfully, was my complete incapacity to do well for both my children.  The feeling of being so desperately torn – to need to be home with the big one, who wanted to get ready for Christmas and go sledding and see the lights and do all of the holiday traditions, while also being emotionally incapable of leaving the new little baby’s side, was absolutely enough to push me to the edge.

We had a lot of support of course, but your presence is one that helped me stayed glued together more than most.  I don’t know that we even talked about Down syndrome during that week.  We must have, but it doesn’t stick out in my brain.  What I do remember is talking about mom stuff.  You shared stories of your kids.  I told you all about my crazy Ellie.  We laughed.  Oh goodness did we laugh!  We actually got in some trouble for laughing too much and disturbing the peace of that quiet little ward.

It was so good to laugh.

As we got to the end of a full week, you helped us to convince the doctors to let us bring her home for Christmas.  You talked to me about how she was ready, because nothing that was happening in the NICU couldn’t be done at home.  And you were right.  You even switched your shifts around to work on Christmas Eve so that you would be there to see us off.  And even though I was so scared to take her home, away from the watchful eye of you and everyone else, I felt like I could because you convinced me that I am enough.

Thank you so much for going above and beyond in your care of our little girl… and of me.  It made a bigger impact that you can ever know.

Most gratefully,

Tessa’s Mom

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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 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 – 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 Blog Readers, Part 2

Dear Blog Readers,

Are you sensing a Friday theme yet?

We had the most lovely visit with our dear friend Ashley tonight.  And so you’ll have to excuse us, again, while we take the night off because we’ve just been busy living.

Maggie 🙂

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