Yo soy La Lay

adventures in family, faith, and Down syndrome

2018

We hibernated through most of 2017. There was a lot of general illness in our family with two kiddos starting new schools with new germs. I was pregnant, we were tired, my gallbladder died… you know, typical life stuff.

(Insert eye roll here.)

In any case, here we are in 2018. Our cast of characters has expanded. We are ready with goals. Let’s go!

John (age at this writing, almost 33): No longer coaching (Praise The Lord!). Still Fantasy Football Commish Extraordinaire. Pretty much Dad of the Year for getting the girls ready and out the door on his own every day. Seriously questioning his decision not to purchase a second car that can fit three car seats so that we can share pick-up duty after work.

Ellie (age appears to be 16.5, but is actually only 6.5): First grade, dual language, Moana-obsessed, definitely type A. Very much like a tiny adult, but with impulse control issues and child-like enthusiasm for all things pink, princess, and McDonalds. Will only wear dresses that are “twirly.”

Tessa (4): A little chatterbox and television fanatic. Quite persistent with all of her demands. Loves old people and anyone who might be willing to give her a cookie.

Lauren (age is somewhere around 6.5 months maybe?): The best baby ever. No, seriously. That’s it. She rocks.

Me (age 32): Still Type A, but really trying to convince myself that I have fallen into the A- category by now. Trying to learn calligraphy, but failing. New Instant Pot user (the world has gone mad for pressure cooking!). Cutting back on wine and all the good foods in life, so please forgive any snarkiness.

I only have two goals for this year: to write at least once a week, and to vacuum at least once a week. I can tell you that last year, I wrote way more than I vacuumed, and you all know how often I actually wrote sooo….. yeah. There’s some work to do there.

Welcome, 2018! We’re ready for you!

Ellie’s first White Elephant win….

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Peace, not perfection

I never tire of the holidays.

I have no max input of twinkly lights.

Buying presents does not exhaust me.  I could wrap for days and days.

I love the endless onslaught of Christmas cookies.

I have no fear of the rush to move from house to house, visiting with family and friends, enjoying coziness and cheer and gingerbread house making and ALL OF THE HOLIDAY THINGS.

(I have probably grown tired of the Trolls Holiday Special but that is beside the point.  Those creatures are annoying.)

I am sure that much of my love of this season stems from the fact that I have two love languages: gifts and quality time.  The American Christmas Season was made for people like me.  I mean seriously – all we do from Thanksgiving through New Years Day is what I love – buy things and love on each other through endless holiday gatherings.

Sometimes where I falter is in reminding myself that the American Christmas Season was not made for all of the people I love.

Eek.

For example, about a week ago, my parents took me and the rest of the ladies in the family to an afternoon performance of The Nutcracker.  I imagined a magical afternoon with my girls, their faces lit up with unbridled excitement at the costumes and the music and the dancing.  As the performance drew nearer though, I began to have some trepidation of how Tessa would respond to the theater environment.  In general she has struggled in concerts, performances, and other events where there is clapping and lots of sensory input.  In the name of including her, we forged ahead with the day, and I was hell-bent on making this a great experience.

Until it wasn’t.

Before the curtain even went up, it was apparent that she was going to sob her way through the performance (I suspect in fear of the moment that applause would break out).  It didn’t matter if I covered her ears or found some other way to block out the noise, she was not going to have it and my magical day with the girls suddenly felt heavy and sad.

I’ll be totally honest – when I ran out of the auditorium and into the bathroom with her, I cried in anger for about 15 seconds because this beautiful experience was so hard for her.  It felt really unfair.

And then, as I sat with her in the lobby and waited for John to take her home so that I could watch the show with Ellie, I thought through all of the hard things that people deal with in the holidays.  I gave myself an internal stern talking-to and reminded myself to calm the **** down.  Because seriously, this is a molehill compared to the hurt that people struggle through during what should be a sweet and festive time.

My struggle with perfection has come to head this season as I have seen my eldest start to navigate the very real irritation that I also feel when things do not go as planned.  She is as I am.  And to help her function in our world, I have to consciously choose peace in the imperfect, not in perfection.

It is not easy.  I have wanted desperately to rearrange ornaments, or people’s choices in meal times, or my child’s psychological brain function…. it’s not realistic.

Peace is not perfection.

Peace is not perfection.

There is still so much to be learned. ❤

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Four

Four beautiful years of joy.

There is no other way to describe them really, not in a word. Certainly we experience fear, frustration, sadness, hope, exhaustion… but in every moment, also a great joy in her presence.

I always get emotional at this time of the year. It’s not the stress of the holidays, nor the deadlines that loom when wrapping up a semester grading period. My breath catches in my chest each and every time I think of her birth – of the moment when I finally held her in my arms, listening to my doctor calm our rattled brains… My mind travels to the mundane… helping our visitors to the hospital scrub into the NICU before seeing Tessa, eating our cake on the night before discharge, child-free, trying to hitch a ride to the hospital to see her, not able to drive quite yet after having an epidural.

I think about the emotions of having two children and not being fully present for either one. The crying quietly in the shower, desperate to be able to be all of the mom that Ellie needed through the holidays, and all of the mom that Tessa needed to heal enough to come home. The fear that we would not be enough for her, or for either of them really. And also being completely enamored with each little finger and toe of this little stranger… that feeling, above all else, I feel like it was yesterday this time of the year.

I have felt simultaneously like the years are flying past at breakneck speed, while also creeping along in blessed slow motion. With Tessa, there is time to savor, to drink in every phase for all of its good and all of its challenges. It feels peaceful.

It also feels wild.

She is high energy – walks fast talks fast dances and moves and runs fast. She can’t do some of the things that four-year-olds can do. But she can do some things that most people will never be able to do in their whole lives.

I don’t know precisely why Tessa was sent to us, but I know that we are more complete with her. Her presence has been a gift that our family needed… that I needed. In her life, there is purpose, there is hope, there is love – and joyfully, we celebrate four years with our sweet little girl.

Happy birthday, Wild Lady. We love you so much!

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DSAM17 – Day 31 – Just another kid

31 days of surprises and the top of my list?  She is just one of the kids.


Tonight we went trick-or-treating with the cousins.  House to house through the neighborhood they went, collecting treats galore.  At each house, they all said “Trick or Treat” (or I want treat! or Do these have peanuts?)  and then “thank you.”  After a marathon of stops, they ate pizza on the living room floor and watched Black Day.

And Tessa was just one of the kids.

It’s like that around here.  Sure, there are some differences.  For example, thanks to low muscle tone, her “I’m done trick-or-treating” looks like this:


And, she may or may not have been given some extra candy on occasion due to her extra chromie. (Who can resist a child who so innocently asks for “more please?”)

(One neighbor told her to pick two and she sweetly looked up and said “how ’bout… four??”  They said ok, but while I cheered inside because yay speech!!, made her stick to the two.)


The reality is that out and about, we saw friends from her swim classes and school.  All the kids that said hello treated her like just one of the crowd.  So while the fear of sticking out like a sore thumb had filled me for years, tonight she was just another little girl in a Frozen costume.  

Will every moment always be like this?  This shining example of community inclusion?  Of course not.  There are many battles to come.  But now, on this Halloween Night, I am savoring the joy of a little girl, more alike than different, who brings so much light to this crazy world.

Thanks for spending this month with us. ❤️

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DSAM17 – Day 30 – All the voices do not speak for us

There are a lot of voices in the Down syndrome community.  They are rich and varied and they do not all speak for me.  They do not speak for my family, or for Tessa.

(I think it’s important to interject here that Tessa’s life is hers, as is her voice.  It is not my intention to speak for her throughout her whole life.  However she manages it, she gets her own voice.)

I have found the variance in these voices surprising.  I had a single story of what I thought Down syndrome looked like in a family’s life.  While some have been empowering in their words, well, I did not know how difficult some of the other voices would be to hear.

Recently, I sat in a talk given by a very loud voice “for” individuals with Down syndrome.  Toward the end of her speech, she said this:

“I know we talked about moms from every category, and I know they exist because unfortunately, I see every category at (the organization she runs).  I’ve seen it all, every day, um, I see kids succeeding, and then I also see the kids that are failing.  And I know why they’re failing.  And it’s really hard to not be able to step in and help change that and sometimes they choose a lifestyle and there’s nothing I can do about it.”

^

I cannot tell you how much my heart ached when I heard those words.

If you are a mom of a child with Down syndrome… you need to hear this:  Your child is not failing.

It doesn’t matter if he has no words or uses assistive technology to speak.  It does not matter if she cannot walk 10,000 steps a day.  It doesn’t matter if you are not ready to call someone out for using the word “retarded.”  It doesn’t matter if he doesn’t write his own name on his paper.  It doesn’t matter if she wears clothes from Justice until she is 65 years old.  Your. Child. Is. Not. Failing.

Please hear those words and believe me.  You are doing a good job, and so is your child.

If you have not heard the TED Talk about The Single Story by Chimamanda Ngozi Adiche, it is linked above.  It is a really great talk, and very much worth 20 minutes of your time.

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DSAM17 – Day 29 – Warning Lights

On Friday when I left school, I glanced down at my dashboard and frowned.  Glowing up at me were my low-gas and low-tire lights.  On a Friday, with an hour commute ahead of me, I just wanted to be home.  But, I knew I wouldn’t make it without stopping to take care of these needs.

The irony of me writing a post about self-care tonight, after my husband’s very sweet post yesterday is not lost on me.  But this year at my Rockin’ Mom Retreat, Laura Bruckner’s talk about compassion fatigue and self-care really struck me.

Do you know what your warning signs are?

Most of us are caretakers in some regard.  Small children, maybe grown children, aging parents, students in our classes –  I suspect that very few people reading this blog are void of any other human being who requires their attention on a fairly consistent basis.  And for a lot of us, those humans are pretty tiny, pretty needy, and may or may not carry some extra challenges that can really wear us down.

For example – we are potty training.

I probably don’t need to explain beyond that statement, but just for grins, let me tell you how well it is going:

Last Saturday, she pooped on the (carpeted) floor of my closet.

Today, our “sit on the potty every 20 minutes” game turned into every ten minutes (literally), because in between alarms, she thought it was a riot to tell us that she was going to poop.  And due to the Closet Pooping Incident, we take no chances.  This went on for about 3 hours.

At 5:30 PM, my warning signs began to creep up.

Warning Sign 1:  Anger

Warning Sign 2: An unrelenting desire to eat carbohydrates

I can be patient.  I can be kind and compassionate and loving toward my children.  And, I can be a total b-word.  So when the b-word mom is coming out, I have to find a way to take a healthy break.

My surprise in all of this is how hard is really can be to find the healthy way to take a break.  Before Tessa, when there was just one little one to keep track of, it was easier.  I don’t know if I needed it less, but finding the time to just be on my own to recharge was not nearly as hard.  My calendar has become my best buddy, as a routine has been crucial to finding the time to chill the heck out.  I have found that I am much better at sticking to my strategies when I have them written down.

Walking.

Writing.

Reading.

Wandering through Target.

(There is some debate in our house as to whether that last strategy is *actually* a healthy habit for dealing with stress.)

In any case, I implore you – take care of you.  You must.  This marathon (whatever it is for you) is hard.  You need your oxygen mask; you cannot take care of anyone else if you cannot breathe.

Do you know what it takes to take care of you?

Mom’s Night Out….  Thankful for this tribe. ❤

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DSAM17- Day 28

Maggie is tired.  No, Maggie has not decided to begin self referencing in the third person… this is John.  I promised Maggie I would take tonight’s blog post because I had an inspirational moment this morning and because I think she could use a break if only for one evening. 

Maggie spent her morning today making everyone their own individual breakfasts. One girl wanted eggs, the other cereal, formula for one, and a smoothie for me. She did this all not because she had to, but out of the kindness of her heart.  That’s the moment that got me thinking…Here are some things that do not surprise me:

  1. That Maggie gives more time to others than she takes for herself.
  2. That she is a champion for all her children while never enabling them.  
  3. She has love for all people and an unselfishness that is borderline crazy.

I could go on and on, but I just felt that Maggie needed to be thanked for who she is and what she is about.  The world needs more people like you, honey. People willing to love fiercely and have “dangerous unselfishness.”  I am so glad to share this life with you and you inspire me to be better everyday.   Keep up the good work 🙂

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DSAM17 – Day 27 – We have fun.

We have the best friends.

Also, can I post-date this back today about 40 minutes ago??!

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DSAM17 – Day 26 – Resources for other kids

I will be 100% honest – work is pretty crazy right now and my energy to write is fading quickly down to nothing this evening.  However, I came across a link this evening that explains Down syndrome and is appropriate for children.  I like to pass these things on to my family because while Tessa is very alike in a lot of ways, there are noticeable differences that the other kids sometimes notice.  So here…. if you have kids with questions, check this out:

Brains On – What is Down syndrome?

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DSAM – Day 25 – The List

Here’s a list of 50 51 things (that are mine to share) that I worry about on a daily basis:

  1. Ellie.
  2. Do I have clean underwear this morning?
  3. Do I have dishwasher detergent?
  4. Are there too many calories in this breakfast bar?
  5. If I don’t eat this breakfast bar, what will I eat?
  6. There are starving children in the world!
  7. How do I raise my children to care that there are starving children in the world?
  8. Should I really have bought this Dunkin coffee when I could have donated to a fund for starving children in the world?
  9. Is this coffee that I just bought decaf?  Or will I be wired in 15 minutes and not sleep for 3 days?
  10. Speaking of sleep, did I get enough last night?
  11. Is that a gray hair?  Or a blond one?
  12. Did John get out of bed this morning?
  13. Did John have clean underwear this morning?
  14. When did Ellie last brush her teeth?
  15. My God, what is she going to wear to school today?
  16. Are kids being nice to Ellie on the bus?
  17. Is Tessa being nice to her bus driver?
  18. Did I sign their folders for school last night?
  19. Does Ellie’s teacher believe that she read for 30 minutes?  Or does she know that I’m guessing?
  20. Is it bad that I’m guessing?
  21. Do other parents actually keep track of how many minutes their children read?
  22. Do other children read?
  23. Did my students do their homework?
  24. Do I need to call home if my students didn’t do their homework?
  25. Am I fostering responsible humans in my classroom who can be independent young adults if I call their parents and tell them that their child didn’t do their homework?
  26. Did Ellie do her homework?
  27. Why does she hate math homework so much?
  28. Will Tessa hate math?
  29. Will Lauren hate math?
  30. How will I help them with math if I can’t figure out the math problem?
  31. Speaking of math… how much money is left in my grocery budget for the month?
  32. Did I take chicken out of the freezer for dinner?
  33. Can we afford to go out to eat instead?
  34. Are there too many calories in a restaurant meal?
  35. Are there too many calories in a glass of wine?
  36. Is it bad that I have a glass of wine on Tuesday night?
  37. Speaking of wine… when did John and I go on our last date?
  38. Do we go out enough?
  39. Are we missing out on quality time with our kids if we go out again?
  40. Does my mom like watching them on the weekend after doing it all week?
  41. Does she just say yes because she feels bad?
  42. Do my children behave with her?
  43. Do my children behave at school?
  44. What if Lauren is naughty at school?
  45. What if I get cancer and die and can’t teach Lauren to be good in school?
  46. When did I last cut my children’s fingernails?
  47. Does Ellie need to learn to cut her own fingernails now?
  48. Am I holding her responsible enough for her own care?
  49. Am I raising a strong, independent young lady if I don’t make her learn to be responsible for her own care in first grade?
  50. Can she tie her shoes?
  51. Am I a bad mother because I have no idea if she can tie her own shoes?

Anyone notice what is missing from that list? (Which, by the way, I came up with in approximately 12 minutes and 43 seconds because that’s how fast I can type).  This is what is missing from the list:

Image result for trisomy 21 chromosomes

After almost four years, I am so surprised at how little I worry about that goofy little extra chromosome.  It took a little while to get to this point, but truly, at this point, I am far more concerned about the clean underwear.

Just sayin’

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