Yo soy La Lay

adventures in family, faith, and Down syndrome

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 ‚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 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 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 ūüôā

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Dear Self Advocates

Dear Self Advocates,

I am so thankful for your voices.

While I love to read blogs written by the mothers and fathers of children with disabilities, it is your words that matter the most to me, your words that hit home.

There are more individuals living with disability who are sharing their stories than I could possibly list here.  However, Aubsome Aubrey, Anonymously Autistic, Tim Harris, the cast of Born This Way, and @djmpoweraz (instagram), you all give me a perspective that I could never get from just reading the stories of parents.

No one person can give the single story of what it is like to live with Down syndrome or Autism or CP or any other disability.  Collectively, your perspectives matter.  I thank you for being willing to share Рbecause it helps me think about the decisions I make for Tessa so that she can be her best self.  Your stories give me pause; they open the eyes of the public to your joys and successes, as well as your trials and fears.  They teach us more about how to treat one another.

I hope you’ll keep writing or vloging or speaking or instagramming, or whatever medium you choose to be your megaphone. ¬†You are making a difference in the lives of families by using your voice and our little ones will be better for the stories that you share.

Thank you so much for sharing,

Tessa’s Mom

 

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Dear Doctor Bowles

Dear Dr. Bowles,

You did not diagnose Tessa Рthat 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 ‚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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