Yo soy La Lay

adventures in family, faith, and Down syndrome

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 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 – because 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 – 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 Ashley

Dear Ashlery,

Girlfriend, I miss ya.  It’s been almost ten years since we spent our first year teaching together up in that tiny little town.  They did a great job when they hired us to work together; we made such a great duo.  I couldn’t have done that first year without my constant companion at Friday Night Football, my dinner date to Chili’s like 5 nights a week, my early morning breakfast buddy, my Spain travel companion… should I keep going??

I think what I love the most about our friendship is that even as different as our lives may be, and for as long as we sometimes go without seeing each other, when we get to spend time together, it always feels like we see each other every day, like there has been no distance or time in the way.

The other day, I had written a comment on Facebook about how I was so glad to have you in my daughters’ lives. I really mean that.  I love that they can see someone so kind and loving, successful, confident, gorgeous, intelligent, who is an awesome friend and family member and a leader in her career.  I feel that it is so important that they be surrounded by strong women, and you are a shining example of that for them.

I often feel like a terrible friend these days.  I know that I have too many balls in the air right now and that my balance is a little off.  Another friend of mine always preaches that people find time for what is important to them and I don’t know, that seems a little unfair to me.  Maybe that is part of my struggle for balance.  In any case, I want you to know that I miss your face!  Thanks so much for always being there to help lift my spirits, hear my whining, and to drag me out for margaritas when I need it the most.

Cheers to pink, sparkly, shopaholic, wine-and-chocolate-loving girl bosses!  Now come over already, will ya??

Love,

Dub

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Dear Baby #1 and #3

Dear Baby #1 and #3,

I must be in a weepy mood this morning.

Perhaps.

Before Ellie and before Tessa, there were you two.  For a few precious weeks, we got to daydream about life with you, to think about who you might be and how fun it would be to have you to love and care for, to watch you grow.

God kept you before we met you and while we couldn’t understand it at the time, we do now.  If we had been sent you, how vastly different might our life be.

The pain of losing you both is eased only in having the grander plan revealed as life moves forward.  It’s really hard to say that I would rather have this baby than that one, but I understand the purpose in the suffering.  I can begin to recognize how each piece is starting to come together to make a far different picture than we imagined – not just because we have Ellie and Tessa, but because we don’t have you.

Little ones, you are loved.  I expect that you are making some others very happy up in Heaven, and that we’ll get to meet you some day.  Thanks for teaching us some lessons that we very much needed.

Hugs and Kisses,

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 Blog Readers, Part 1

Dear Blog Readers,

Thanks for understanding that we love to be out and about loving life.  As such, tonight’s post is a short one.  More to come soon.  For now, I’m just happy you are here.

Hugs,

Maggie

A little cuteness to tide you over until tomorrow…




 

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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