Yo soy La Lay

adventures in family, faith, and Down syndrome

Lesson #31: There is beauty in this change

This is the last post of the 31 for 21 Blog Challenge!

This is my most important lesson.

Upon returning from my summer Study Abroad program in Ecuador during college, I did something completely uncharacteristic of me: I got a tattoo.

Evidence.  And, a new ab binder.

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If you were to line up my brother, sister, and I, I’m fairly confident that no one would peg me as “the tattooed one.”  I still wonder, on occasion, if the tattoo that my brother got was simply an effort to not be outdone by his nerdy sister. He would never admit it, of course, but still…

(On an unrelated side note, I think that my dad was more than shocked by this.  In the weeks following The Tattoo, he wrote the word “Hola” in permanent marker on his foot in silent(ish) protest and then showed it to me every time I saw him.)

In any case, the words permanently stenciled on my left foot are a quote from the Cuban revolutionary Che Guevara. Controversial, I know. In Spanish, it says, “Let the world change you, and you can change the world.”

Never has this been more relevant to me than it is now.

When I think back to my old high school yearbooks, I remember a lot of the signatures urging “stay sweet!” or “don’t change.”  Um.  Thank God I am not the person that I was when I was 17.  Seriously.  With time comes perspective and if I could re-sign all of those yearbooks now, from the eyes of my almost-thirty-year-old-self, my message would be quite different….

Change.

Change every day.

Don’t harden your heart when you experience struggles.  Grow.  Learn.  Experience.

Change.

Listen to the stories of others.  Open your heart to what they are telling you.  Seek to understand, to support, to love.   Be compassionate, caring, empathetic, kind.  Take what they have to show you and make a difference.

That is all we can do to leave this world a better place than how we found it.

When I think about little Miss Tessa and her place in this world, my prayer is that others will seek to understand when they interact with her.  She doesn’t have to perform any great miracles or bust through any stereotypes.  But maybe, just maybe, she will teach someone how to love.  Maybe someone will connect with her in a way that will open their heart to more patience or acceptance.  Maybe her smile will make a difference on a bitter day.  Maybe including her in a classroom of typical children will be a greater lesson for her peers than can be found in any textbook.  Maybe cheering on her successes will create advocates in unexpected places.

When we allow the experiences of others become a part of our hearts, we can change the world.

Will you let her change you?

J Sync 6 5 14

 

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Lesson #30: Things I’ll never say again

1. “As long as it’s healthy.”

It doesn’t matter.

I said this a lot during both my pregnancies – especially when people would ask what gender we were hoping for. It was an easy response… “Oh, we don’t care, as long as it’s healthy.” I worry a lot about that qualifier and the message it sends to other parents – as if anything less than healthy makes a child unwanted. Nobody wants their child to hurt. However, I really cannot say that I would prefer a child without extra needs. In this family, if a child is not healthy, it will still be loved.

2. Is he (_____)ing yet?

It doesn’t matter.

It’s become a predictable habit of mothers these days to talk at length about what babies are doing. We share their weights and heights like trophies of our success as mothers –
the bigger, the better. It’s silly, really. And to a mom who is worried about her child for any given reason, it can be alarming.

I’ve said this before – it’s very freeing to have a diagnosed child who we know is on her own schedule for pretty much everything. But for those children who have no extra needs and are just a little behind, or those who do have extra needs but aren’t diagnosed yet, the comparisons can be unsettling. Even scary. So I’ll leave the milestone questions to the doctor.

3. Can I hold the baby?

When offered, I will, on occasion, accept. However, I’m not asking for the simple fact that I don’t want a mom to have to feel awkward about telling me no.

When Tessa was a new baby and people asked to hold her, it freaked me out. This really wasn’t about the germs, it was about her floppiness, lack of head control, and preference for hyper-extending her arms. I once (jokingly) asked the PT if I needed to coach every person who held her, fully expecting that she would tell me no, as long as it was a short period of time. And then she said “umm…. Unfortunately, yes.” Oookee dokee. It got really awkward for me, trying to explain to so many people why they couldn’t just hold her like they want. And since you can’t always “see” extra needs, nor do you know if a mom is uncomfortable saying no, I prefer to just avoid the situation altogether.

There is no need to walk on eggshells around other moms, but sometimes, a little empathy… a little consideration for others and their stories… that is what can make all the difference in our interactions with each other.

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Lesson #29: No passing up snuggles

This is part of the 31 for 21 Blog Challenge!

How did we arrive at Day 29 of this challenge already?! Unbelievable. This has probably been one of our busiest months yet. And here we are at Day 29. You are going to have to forgive my short post tonight. I have no excuse except for this:

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These days, when we’re running like crazy and the girls are stretching their independent streaks, I cannot pass up snuggles.

At 6:15, Ellie snuck up into my lap with FOUR books. How can you resist a little lady peeking up through mile-long eyelashes, begging you to read “just one more, please?”

After Ellie went down, the other munchkin was ready for her chance at some lap time. Once I wrestled her meds into her (eye drops in this squirmy worm… Yeah right. Anyone who says people with Down syndrome don’t get angry should watch this fabulous spectacle), she settled in for a snooze.

I do not make a habit of holding my children while they fall asleep. It’s not how we roll. But, on rare occasion, it is kind of lovely.

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Lesson #28: I wish it wasn’t on the news (sort of).

This is part of the 31 for 21 Blog Challenge!  We’re almost to the end……

Frequently, news articles pop up on my Newsfeed on Facebook with headlines like Couple with Down Syndrome Chosen as Prom King and Queen or Man with Down Syndrome Opens Restaurant.  I love these celebrations of people’s accomplishments.  They are “feel good” stories.  They are inspirational, barrier breaking, door-opening.

They also make me sad.

Articles like the above represent a weird paradox for me.  I am uplifted by them because they are a reminder that there are no limits to what Tessa can do.  I’m annoyed by them because if society would just stop seeing her as less than, they wouldn’t have to be news stories in the first place.

Celebration and a heavy sigh in the same breath.

I want Tessa to be accepted by her peers and I don’t want someone on the Nightly News to think that acceptance merits a news story.

I want Tessa to do whatever she is capable of and I don’t want anyone to be surprised when she does.

I realize that we are not there yet and so the new stories are necessary.  I’m thankful that the message being spread is that people with Down syndrome can (whatever).  I know that when we first got the diagnosis, there was a tremendous amount of comfort for my husband in watching a YouTube video of a boy with Down syndrome receiving a college acceptance letter.  He probably watched it 400 times during the first week After.  I just hope that someday, this becomes so commonplace that we can celebrate in the same way we would for our typical daughter – with a dinner out at Chili’s and an extra scoop of ice cream for dessert.

Someday.

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And now, a little group selfie (are these called “groupies” yet?) fun…

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Lesson #27: Great nurses rock our world.

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU.  They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient.  Theresa was outgoing and athletic.  Tessa has been our little scooter/swimmer/mover since long before she was born.  These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding 

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Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home.  I told her about our family and Ellie’s crazy antics.  She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two.  She encouraged me to take breaks to enjoy my older daughter.  At times, there may have been a few tears, but goodness, did we laugh!!  On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down.  We got a lot of “looks.”

Totally worth it.

She was exactly what I needed.  Theresa loved my little girl immediately.  She forced no unsettling stereotypes on us.  She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged.  We all cried.

Home at last…

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Jan was a different kind of perfect nurse.

In April, I was frustrated.  Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful.  😉

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When Jan was assigned to Tessa, I was a little worried.  She was no-nonsense.  She was pushy.  She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity.  There was no woe-is-me.  We were to get the baby well and get on it with.  Jan was caring and compassionate, but she was on a mission to get our girl discharged.  And so we did.

Freedom!!

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We are so fortunate to have been under the care of these amazing women.  While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

 

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Lesson #26: It still goes so fast

Someone told me that I would get a “prolonged” infant phase with Tessa.  I was assured that I would have more time to enjoy each stage because it would take longer for her to grow up.  And I’m sitting here today wondering who that person was, because they lied to me and I want to find them and tell them.

One hour old baby Tessa

IMG_3908Don’t get me wrong.  We are very, very much still in the infant phase.  Tessa is nothing like a typical ten-month-old baby.  I’m enjoying all the moments, but it still doesn’t feel like time has slowed.

One month old baby Tessa

IMG_4347You see, this weekend, a little tiny tooth popped through Tessa’s bottom gum.  And it kind of has me in a tizzy.  Because I really like her gummy grins  A lot.

Four month old baby Tessa

IMG_5028Five month old baby TessaIMG_5426It took us a little while to get them… and now I love each and every one.  And I know that it will still take a long time before we have a full on, toothy grin.  I just want a few more of these to savor for now…

Seven month old baby Tessa

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Nine month old baby TessaIMG_6276

Time is flying….

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Lesson #25: This is good for the Big Sister.

“But what about Ellie?” John asked, just a few moments after he met Tessa.  “This isn’t fair for her.  We’re gonna die someday, Mag, and this will be all on her.”

I had no response at the time, other than “oh well.”  But as a little time has passed, and we have reflected on where we are going, the realization that we have both come to is this:

We would do it for our siblings, too.

In reality, we have no idea what is in store for us.  But, Heaven forbid, if something were to happen to my brother or sister and they needed long term care, I’d do it in a heartbeat.  No questions asked.

Why would it be any different for these two?

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We had a little Indian Summer in the Chicago area today, so we visited a pumpkin farm that is run by a coworker of mine.  It was lovely.  🙂

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Once you get past Tessa’s sweetness, please note Ellie making a “corn angel” in the background here…IMG_7738 Family Fun in a giant corn storage container…IMG_7736   IMG_7734 photo 3 photo 1 It was the first year that Ellie was brave enough to touch the animals!photo 2IMG_7715Gotta love looking into the direct sunlight for a family photo… especially when the children are being particularly uninterested in a picture.IMG_7718

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Lesson #24: She’s just another leaf

I have had very few negative thoughts regarding Down syndrome.  But I’ll let you in on a little secret: for several hours after she joined our family, I was terrified about family pictures.  Somehow, in my brain, I had decided that family and friends would no longer want to take pictures with us because they would not want to have a picture of Tessa hanging on their living room wall.

This is, without a doubt, the most ridiculous thought that I have ever had, bar none.

(Except for maybe the night in college that I thought a bottle of Jack Daniels and some Dixie Cups would make for a good night.  But that’s a whole other story.)

Since she arrived, Tessa has been just another leaf on the family tree.  She’s different, but we all are.  And not one person in our family has taken her as anything less than that.

Being a part of the community of families with children with Down syndrome, I hear a lot of stories.  Most are positive.  Sometimes, however, a mom comes looking for advice on how to deal with family/friends who are struggling to accept her child.  There are families who refuse to acknowledge the baby, or who won’t hold it, or those who treat the child differently through words and actions.  My heart really aches for those families.  It also overflows with love and gratitude for my own.

(Just to clarify – when I say “my family,” I am talking about the whole dang thing, from both John’s side and mine.)

When Tessa was born, I did a really poor job of allowing other people to process our new situation in their own way.  No grieving was allowed on my watch.  Whether I should have let go of that control is a question for a different day, but in reality, I don’t think anyone would have grieved anyway.  Because this is how life really is:

Tessa has four doting grandparents, who love her fiercely and in completely different ways.  They are teachers, snugglers, cheerleaders, and many times, the glue that keeps John and I running smoothly when life is exceptionally busy.

She has aunts and uncles who hold her and play with her as they would any other child.  She adores them.  If there is one thing that we have learned about Tessa’s personality, it’s that once she has attached herself to you, her eyes will look so deep into your eyes that you’ll swear she’s looking right at your soul.  All of her aunts and uncles get those looks.

Tessa’s cousins make her giggle. They poke and prod her, motivating her to get moving.  They give her kisses and pull her hair and sit on her and take her toys just like they would with any other child.

I could not ask for more.

(this pic was taken by my fabulous cousin, Jessica.  It’s blurry now for lots of reasons. 😉 )wdowiarz pic

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Lesson #23: There is an abundance of support

The first few hours days (?) after a diagnosis can be, quite frankly, isolating.  Few really quite know exactly how to respond.  Somehow, your family has become different and you really aren’t sure how.  You feel like the same person and entirely different at the exact same time.

Soon, support comes trickling in.  Or flooding in, as the case may be.  It flooded in our world.  We were blessed with that.

Since Tessa has joined us, I have joined UPS for DownS, NADS, a Down Syndrome Diagnosis Network‘s Rockin’ Moms Facebook group, a local mom group called the MODSSQUAD, another local Facebook group called Gene Rockin’ Moms and a Baby Center group.  There are a mountain of blogs that I read (check out my reading list on the sidebar).  I follow Gigi’s Playhouse on Facebook and get their mail, also.  We haven’t gone yet.  Quite frankly, with all of the support, we’re still not sure where we fit in.

When I first started out on this journey, I felt like an impostor.  I vividly remembered life Before.  Ten months ago, I didn’t even know that advocacy like this existed.  Special needs were not on my radar.  I have no idea what I spent hours online doing.  And I felt like, at any moment, someone who was further along in the journey, someone who doesn’t remember Before, might look at me, the fresh-faced newbie, and think, “Well, where the heck has she been? And does she think she can just come in here and start caring now?  Where was she before?”

I really, really worried about that.  It hasn’t happened.  And it won’t.

Our NICU social worker told me that I don’t have to like all the moms of kids with Down syndrome that I encounter.  Thinking back on that has always made me laugh.  She told me not to feel like I have to befriend everyone with a child with Ds and reminded me that just because we have this diagnosis, doesn’t make our family exactly like any other.  To me, sharing the common experience has helped me forge a bond with some other mommas that I hadn’t met before (I started to list all their names and it got too long, so I stopped).  They are still young friendships.  We are less than a year in, after all.  But my mostly-extroverted self is loving this new opportunity to spread my social circle and connect with moms who can relate.  And I don’t feel much like an impostor at this point.  🙂

Not all support comes from strangers, though.  Tomorrow, a post dedicated to the ones who have been here since Before and are still here.

A completely unrelated Throwback Thursday picture, just because….  

10 month old Ellie

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Lesson #22: We take our colds very seriously.

Sitting in the doctor’s office, staring at the little yellow box.  It keeps beeping.  Tessa’s kicking the nurse, willing her to leave her finger alone.  We wait (im)patiently for the reading to appear and it doesn’t seem to be in any rush to do so.  There are fewer moments these days that feel longer than the ones that separate you from a potential hospital stay.

This time, the reading was good.

Sinus infection.  Pink eye.  Round of antibiotics.  Have a nice day!

Colds are a challenge for some children with Down syndrome.  There are a few reasons for that – smaller airways and sinus cavities, low muscle tone (slowing becoming the bane of our existence), which makes it a challenge to build enough strength to cough out the gunk…  All I know is that I’m not interested in another stay in the PICU.  So, I’ve become the hyper-vigilant Mother Bear that I was trying so hard to avoid.

When Ellie was younger, I had no fear about her catching a few minor colds.  Is that odd?  It’s not like I hoped that she would feel crummy or that she would have to deal with the symptoms.  Goodness knows that the sleepless nights weren’t thrilling.  I was just all about building up her immunity while she was young and exposing her to colds is one way to do that.  In no way is this my approach with Tessa.  I have no interest in exposure.  We aren’t living in a bubble, nor do I expect every person who has a sniffle to stay away, but I’m certainly more cautious about who holds the baby.  I would never (Never.) have taken Ellie to the doctor for the cold symptoms that Tessa displayed today.  But this is a whole new ballgame, isn’t it?

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(By the way.. do you see the new greenish paint in my kitchen??  LOVE it.)

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