Yo soy La Lay

adventures in family, faith, and Down syndrome

Reflections from Papa Larry

My father-in-law Larry is the glue that holds a lot of things together.  His devotion to his family, his friends, and his church binds us.  He is a juxtaposition of the strong-and-silent type mixed with a little heart-on-your-sleeve sentimentality.  He loves his grandkids so very much – and they know it.  Larry is the only person allowed to refer to my children as princesses.  While the word always makes me cringe when anyone else says it, when he says it, it’s endearing.  🙂

When I think about what Larry went through when Tessa was born, I think it might be kind of like how couples with a prenatal diagnosis might feel.  There are pros and cons to finding out before birth.  I always figured that getting difficult news might be a little easier with the baby cradled in my arms.  On Tessa’s birth day, he had a terrible cold, so while the rest of us had the comfort of holding the little baby who had just rocked our world, he could only guess what she might feel like, look like, be like.

This is Larry’s story.

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Shortly after arriving at work, my cell phone rang.  I knew it was John and am always glad to hear from him.  With a chuckle in his voice he said something to the effect of….”hey, you ready to be a grandpa again today?”  “You bet,” I said with a smile on my face.  “Let us know when we should head out to the hospital….Love ya….Go with God.”

I didn’t think that much about it during the morning.  This was a day I had planned to get home early in the afternoon anyway.  After being home for a short time, he called again.  Judy quickly grabbed the phone looking for news.  I could tell by the seriousness in her voice that there was something to be concerned about.  She seemed to be on the phone for an endless time and what I was hearing wasn’t making much sense.  When she finally hung up, she looked at me as serious as she ever had…”they think the baby has Down syndrome.”  The knot in my stomach brought the news home….. let’s go!

The thirty to forty minute drive to the hospital was pretty quiet.  I kept thinking that this is probably a mistake, “they” make these mistakes all the time, and besides, this doesn’t happen in our family.  In the back of my mind, I also knew if it was true, there was a reason for it and God was in control and He could handle anything… but I was still not believing it was true.

We visited the kids with a thousand questions, not really knowing what to ask, and where did we go from here?  Not much was said about what to expect just that other than the Down syndrome, she was a pretty healthy kid.  Thank God for that, but again, there were so many questions.  I remember Maggie saying to Judy, “you can go see her” and looking at me, she said “you can’t.”  Nothing personal, I was fighting a pretty bad cold, so my turn would have to wait.

Most of the rest of that day was pretty fuzzy.  Wondering, questioning, looking for bright spots, life for these two great kids was not going to go as everyone had planned.  I kept thinking if there were ever two young people that could deal with some of the tough curves of life, these two could soar like eagles…. and they did, and they do.  Their faith, their families, their friends, their support will all unite and comfort them with all the challenges to come.

The next day, I remember walking through the parking lot headed to work (I am the assistant to the pastor at our church).  I can remember saying to myself, “just come out and say it to them, you’re a strong guy.”  It was not so easy.  When I got into the office, I started to explain that something happened, dry throat, eyes watering, speech shaky.  I have always felt blessed to work in a church office, but never more than that day.  Pastor Dan is my friend and my supervisor, but now when I needed it most, he was my pastor.  He told me to come into his office and he said all the right things.  I can’t remember much about exactly what he said, but it was what I needed.  His prayer assured me that God was in control and everything would be okay.

The next day, the guilt I felt was huge.  How could I react the way I did?   We got this precious gift from God and I’m feeling sorry… since then, I have learned how blessed we are to have Theresa Lynn Lay as the newest member of our family and the blessings continue.

My heart really goes out to parents that have lost a child, or have given one up for adoption, or have decided to terminate.  I pray for them. These losses cannot be replaced and their hearts feel such devastating heartbreak.  Every time I look at Tessa and see that beautiful girl with her marvelous smile… I think, thank you Lord for Tessa Lynn… this sweet precious child.

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Reflections from Oma

There are people in this world who find joy in all circumstances, who rejoice in every day simply because.  This is Judy, my mother-in-law.  You would be hard-pressed to find another person who loves fun more than she does.  She feels everything so very deeply, her love for all of us is bold and strong and faithful.  That love is given freely to any and all who cross her path – it is an inspiration.  

 This is how I got Judy’s entry:

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There is something so beautiful about the written word… we miss that in the blog world sometimes.  Especially with handwriting like hers, it is just lovely.  This is her story, (mostly) transcribed by me.

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I can’t remember how I knew Maggie was in labor.  Johnny must have phoned.  I do recall wondering why it was taking so long.  I recall the “mom” in me starting to worry… I recall checking the clock… and I recall saying a prayer.

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think I stayed strong for him and said all the “right” things, but honestly, my heart hurt for Maggie, Ellie, and Johnny!  It hurt bad.  On the drive to the hospital, my mind and emotions flew.  Question after question….  Will she need surgeries?  Will she ride a bike?  Will she be in school?  Boyfriends?  “Regular” friends?  Will people hurt her?

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I had myself knotted up in a wad and told God, “this is not fair!  It’s not right!  How can you do this to this strong and loving family!?”  In my heart, God answered me, saying it was because of this exact reason that he sent Tessa Lynn to them.  OK.

So, we arrived at the hospital just as Johnny and Maggie were headed down to the NICU, where Tessa was.  We had a brief hug fest and went to wait in Maggie’s room.  Mags’ mom was there.  She was calm and “normal” and I was anything but!  She quietly shared information, some she knew and some she researched, with Larry and I.  Then she smiled and said, “this is not Tessa with Down syndrome.  This baby is just Tessa Lay.”  It was a comment that made my complicated simple.  Her gentle perspective was not lost on me. (Thanks, Mimi!)

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When the parents came back, Mags was just like her mom and I chuckle because Johnny was just like me.  We had calm and crazy times two!  John seemed to flit in all directions and was unable to stay still.  I hurt for my kids, but tried hard to focus on my earlier conversation with God back in the car.  They are a very strong and loving couple who can do this, and they will do this well!

At some point, Johnny, his father-in-law Tony, and I  went to the NICU to meet our girl.  As John and I walked, I reminded him to live by the words that are tattooed on his arm: Be strong and courageous, do not be discouraged, for the Lord will be with you wherever you go. (Joshua 1:9)

We entered the NICU room.  Lots of tubes and beeps and equipment.  Under the blue light for jaundice lay our girl!

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In checking her out further, I saw her open hand (I, personally, love childrens’ hands! 🙂 ).  Hers was open, just like baby Jesus in every Nativity that you see.  Not a tight fist… open.  I took that as my invitation and placed my index finger in her palm and I smiled as the little fingers closed snugly around mine.

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I love her, and her mom and dad, and her big sister always and forever, no matter what!  I thank God for His wisdom daily in sending her to us.  She is a fabulous addition to our family.  Perfect.

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Reflections from Mimi

My mom is the kind of person who knows the life stories of many strangers.  Though I cannot tell you what it is about her that make her this way, when she talks to you, you just want to tell her everything on your heart.  She has a kind face and a gentle smile.  She is an excellent listener.

Later in her life, she studied social work and was trained to work in hospice care with the terminally ill.  In a crisis, she is the one you want to help you process through your feelings.  She’ll “social-work” the heck outta ya and you won’t even know what hit you.

By chance, she was the first person in the room after Tessa was born and for that, I am eternally grateful.  This is her side of the story.

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The secret joy of Tessa hugs.  Those crunches that end with her cuddled into the crook of your neck that are extra special at 5:30 a.m.

The wonders of milestones met.  They don’t happen in the blink of an eye or suddenly.  We get to watch each painstaking step toward achievement.  Milestones that Tessa meets at her very own speed.

The strength of two dedicated, strong parents.  John and Maggie are two individuals, working as a team and meeting the needs of not one, but two special girls.

I have learned so much since Tessa was born.

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I have told everyone, any chance I get, that being a Grandparent is the BEST gig in the world.  When Ellie (our first grandchild) was born, I thought I’d met the most wonderful baby… ever!  When grandchild #2 came along, I secretly feared I wouldn’t love that child as much as Ellie.  Boy, was I wrong.  Tessa is #4.  And with her birth came an opportunity to learn a whole new meaning of love.

The moment I received the news that Maggie was in labor and headed to the hospital my heart was filled with excitement. As was pre-arranged, I would be available to meet her needs first by caring for Ellie, and then also to be moral support as John tends to get a little bored by labor.  So, when I got the text asking for re-enforcement and lunch (for John),  I settled Miss Ellie with her Papa and headed to the hospital.

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When I arrived, I phoned the nurses’ station to be allowed on to the floor.  My request was met with obvious hesitation.  I wondered what that was about.  I said, “She asked me to come.”  They let me in and told me which door to go to.  Then there were the huddled whispers that I didn’t understand… until I walked in the room and saw John holding the baby!  Oh, I thought, the baby is here! That was the reason for the looks.

Nope!

Maggie (or John, I’m not absolutely sure) said, “The baby has Down Syndrome.”  Just like that, I knew our lives would be forever different.  I was blessed to have the opportunity to spend time with this young couple as they began to sort through their thoughts and feelings.  I did a lot of listening that day.  I listened as Maggie spoke of a fear of people “feeling sorry” for them.  I listened as John spoke of fears for the unknown future.  We talked about the shock of the news, which could have been broken with a little more finesse.  We talked about those fears and worries. We also talked about unexpected joy and strength that is granted just when it is needed.

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One truth in life is that NONE of us  has a guarantee to live the way we expect.  No parent can ever be sure that their child will grow up to be who or what that parent thinks they will or should be.  We do the best we can with what we have in front of us today.  We take each day by faith.  And we PRAY!!  We put our trust in Him that knows all.  And finally, we LOVE with all our hearts.

And, oh yes, I forgot to tell you the BEST part of that day.  It was the time I was able to spend holding my newest grandchild, Little Miss Tessa, with whom I fell in love at that very first touch.

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One year is almost upon us.  I continue to be thankful for the gift of Tessa in our lives.  She is AMAZING!  She is a sweet and funny girl!  I even see a bit of her Mommy’s sassy side from time to time.  John and Maggie have proven to be the perfect parents for this little girl.  That is what you said, Maggie, isn’t it?  “God gave this little girl to us.  Who are we to question??”  Ellie is clearly proud to be Tessa’s sister, as she tells any stranger.  I am excited to see what is in store for our sweet girl.  Happy Birthday Theresa Lynn Lay!

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It’s time to celebrate

365 days ago, this was my family.  It’s the last picture Before.

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We were celebrating my graduation with a Master’s degree.  We were celebrating an ease in the workload that we had put on ourselves.  We were celebrating a little break to prepare for our newest addition.

We did not know the surprise that was in store for our family just 4 days later.

Surprise from a baby who would arrive long before the crib was ready or the clothes were upacked into drawers.

Surprise from a baby girl that I was sure in my heart would be a boy.

Surprise from a baby girl that arrived after just 8 short hours and two quick pushes.

Surprise from a baby girl with one tiny extra chromosome that would turn our whole world upside down.

Shock. Hope. Fear. Joy. Pain. Excitement. Guilt. Devotion. Frustration. Reassurance. Confusion. LOVE.

This week is a celebration of our little girl Tessa.  We feel like we might have missed the party the first time around, so this year, we promise not to mess it up.  Through a series of posts this week, we celebrate her first birthday with reflections on the day from the perspective of others who were there.  My side of the story can be found here and here.  I hope you enjoy hearing what everyone else has to say for a change. 🙂

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Chatter

Car rides with Ellie sound like….

Hanging out with Tessa sounds like…

For better or worse, quiet is not a word that is in our vocabulary these days.  🙂

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Not-So Magic Kisses

Well, did you miss me??

I’ve been commanded to blog, so blog I will.  Let me tell you about the highlight of my week.

On Thursday, Ellie had a day.  Actually, a week.  Oh my.  This whole daylight saving time change?  It’s crap.  I believe that the sole purpose of “falling back” is so that people who don’t have children and don’t like children can torture those of us who continue to overpopulate the earth so recklessly.

So anyway…. the highlight of my week.  After the wild day Ellie had with the Saint that is our daycare provider, I decided to take the girls to the grocery store to pick up some frozen pizzas.  Why not reward bad behavior with a delicious treat?  We made it through the shop relatively calmly.  However, in the checkout line, disaster struck.  Ellie took an epic fall and bonked her head on the wall next to us.

The “wind up” when kids are about to wail?  This one was a full 5 seconds.  One-mississippi, Two-mississipi… You know.  The waiting is excruciating.

People stared (c’mon now, ya’ll have been here, too).  I tried and tried to calm her.  We were approaching meltdown, so I decided to pull out Mommy’s Magic Kiss.

Me:  Hey, hey, let me give you a kiss.  It’ll feel better.

Her: (sniffle, sniffle) Oooooo..  kkkkkkk…  (sniffle)

I plant a kiss on the back of her noggin and say a little prayer.  Please work, please work, please work…

Me: Okay, okay, now, are you feeling better?

Her, screaming:  YOU MADE IT WORSE!!!!!!!!!!!!!!!!

From there, I may or may not have resorted to bribery.  Checkout-line candy is oh-so convenient that way. And that, my dears, was the highlight of my week.

The end.

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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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