Yo soy La Lay

adventures in family, faith, and Down syndrome

Ready, set, go… Year 3

31 days of blogging for Down syndrome awareness month…  on my iPhone.

Yikes.

We don’t have a working computer these days, but I’m determined y’all. Starting tomorrow, we’re covering 31 surprises about life with Down syndrome.  Please bear with me on the formatting.. and the typos.. and all of the joys that come from doing this without an actual keyboard.

If you have missed us, my apologies.  I have missed you too!  I have been so itchy to write, and really can’t wait to bust out of my technology-failure-induced-rut.  There’s so much to say!!

Here we go!

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Dear Tessa

Dear Tessa,

I’ve been thinking a lot about what I want this to say.  Saved this one for last because it’s got a whole lot of emotions behind it.  Kept it short and sweet so that I don’t become a blubbering fool.

I didn’t know what it meant to be an advocate for someone until there was you.  I mean sure, I have rallied for family, for students, for classmates, coworkers, you name it.  But it all pales in comparison to my drive to be your champion.

There is no corner of my life that was not completely transformed by your very existence.

I want you to know that no matter how long the road is, I’m here for you.  My goal is to be your voice only as long as you need me to be.  All I want is for you to be happy, no matter what happy means for you.

I am not fearful of our future.  I am not worried about how far you will go, or where you might stumble, or how much work there is to do.  I know that there is much to think about and plan for.  I will be brave because you are worth it.

You don’t have to be more alike than different, but you can be if you want.  You don’t have to rock the 21st, but I think you already do.  You don’t have to be a Down syndrome superstar on YouTube or in the news for breaking down barriers.  But if you find a dream, let’s chase it. 

Girlfriend, I adore you.

Wuv yeeeewwww!

Mommy


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#DearDoctor

Dear Amanda,

In the instant you said Down syndrome, you shattered our world into a thousand bright and beautiful pieces.  I had labored, fast and furious, and in the chaos of her birth, with all of the noise, the oxygen, the vacuum, the frantic prayer to cry, baby girl, cry, there was then stillness.  And quiet.  And grasping for understanding.

I was not fully present when we first heard the words “Down syndrome.”  I was in the final stages of labor, so very far from my husband and my baby.  I overheard the words across that room – that giant, cavernous space.  I pushed away from my bed and propped on my elbows, trying desperately to hear.  My husband is not a good listener, you see.  And he was there and I was not.

It felt nonchalant, the pronouncement.  I often wonder if everyone in the room already knew and thought that we probably knew, too.  We did not have time to process.  In an odd turn of events, suddenly my mom was there and we were moving forward and there were tests to be done and then I was in my recovery room without a baby, listening to a genetic counselor tell us about how soon we would know for sure.  “Look, I’m telling you she has it.  There will be a blood test to confirm,” she told us, “and I’m going out of town, but my intern will call you.”

The first moments when a parent hears the words “Down syndrome” are jolting.  The delivery of a diagnosis sets the tone for how those first weeks will go, how information will be processed – and in many cases, will have a profound impact on the life of that little baby.  In that delivery room, in that moment, your relaxed and matter-of-fact proclamation made this diagnosis seem irrelevant – and it didn’t feel like it should be.  Now, it seems that you were right, that Down syndrome is a distant second to Tessa and her personality and big, toothy grin.  So I thank you for that.  It is part of her, but is not her.

Every mother in the Down syndrome community, whether her child is two or sixty two, can tell her diagnosis story like it happened yesterday.   Please help us make those stories powerful, not because they are devastating, but because they are positive.  While our own diagnosis story is by no means grim, note that the guidelines published by the National Society of Genetic Counselors recommend telling both parents, together, at a time where information can be shared and processed appropriately.  A balanced, open dialogue that includes current and relevant information about the potential of individuals with Down syndrome, as well as their influence on the family structure, can go a long way in changing perceptions about Down syndrome for families, as well as in our society as a whole.

You see, while our world seemed shattered on that day, with information and support from the Down Syndrome Diagnosis Network and our local groups, we have built those shattered, beautiful pieces into a life far more vibrant than we could ever have imagined.  Your part in that story is etched into our hearts forever, and I invite you to join us in helping others start their journey surrounded by all the love and support that is available.

Thank you,

Maggie

To provide anonymous feedback to your physician regarding a Down syndrome diagnosis, please use the Down Syndrome Diagnosis Network’s Physician Feedback form, found at  http://www.dsdiagnosisnetwork.org/feedback.

Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections and support. www.dsdiagnosisnetwork.org

 


 

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Dear EI Team

Dear Karen, Karli, Lori, Suzanne, and Beth,

And also Kim, Rachel, Joan, Shannon, and Kate,

And Sue,

Look at you all!!  We have been so blessed with not just one, but two amazing Early Intervetion teams.  I had been so terrified to leave our old home because it would mean a new CFC and a new team of therapists.  We had an amazing team, who Tessa mostly liked, or at least tolerated, and some of the moms can be so negative about their experiences with therapists (and rightfully so).  So we when we moved, I was nervous that we couldn’t possibly hit the jackpot twice.

We did!

You all have been such a positive influence on Tessa and our family. You give great suggestions for modifications that make her path more accessible.  You help us help her and made it so easy to get the equipment that she needs.  But what has been the most influential is that way that each of you has talked to us about her and her unique strengths and challenges.  It’s never about kids with Down syndrome, it’s just about Tessa.

Too often, I hear moms distraught by the delays that their child is experiencing.  They lament the IFSP meetings where the therapists rattle off all of the things that the child isn’t doing.  None of you has ever done that to us.  We aren’t unrealistic; we know that she is delayed.  All of you have helped us navigate those feelings and accept that her timing is all that matters.

As we head off to school in a few short weeks, I’m again fearful of leaving the safety net of our EI team.  As you all keep telling me, she is ready for school, and she is going to love it.  But without your home visits and your detailed reports, and your suggestions for what we can do at home, I’m so nervous!  Her preschool teachers sure have big shoes to fill.

Thank you so much for what you do. You are overworked and underpaid, but so so loved.

All the best,

Tessa’s Mom

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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.

😬

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 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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