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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Milestone madness

I swear to you, Tessa comprehends every single thing I say to her therapists. Just as soon as I tell them that she is struggling with anything, she masters the skill and I end up looking a little silly.

Tuesday, our PT and her supervisor came for her weekly session and I had an extensive list for them. I expressed that I was still concerned about her refusal to use her left hand. I shared that she was sort of sitting, and sort of getting into her sitting position from laying down, but that she would not lift her left hand.

As of Friday, we have a sitter. And she’s a sitter who can get herself into a sitting position all by herself. And while she is there, she can play with toys!

I also vented a little about how I have to change the way I laugh because every time I laugh loudly (which is often), she cries. She doesn’t cry when anyone else laughs and I’ve been starting to get more than a little dismayed at being the sole cause of my child’s tears.

Since Tuesday, we have not had even one meltdown.

And, the icing on the cake is that our Little Miss started clapping yesterday. I didn’t even complain about that one yet! 😉 It’s very quiet and sporadic, but it is really happening.

I wonder if I start complaining that she can’t change her own diapers, will she pick that up right away??

Needless to say, it has been a week full of Tessa milestones. This will be our first week of four-days-a-week therapy, along with John’s last day of grad school, his graduation, two evening service projects with my National Honor Society kids, and the usual chaos that comes with the end of the semester for two teachers. We’ll see you on the other side…

And now, cuteness:

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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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Miss Cranky Pants

Three times I’ve written this and three times, it has been deleted.

Ladies and gentlemen, I am 100% stuck in a rut.  Miss Cranky Pants?  Oh yeah, that’s me.

My hope is that just throwing this out there will somehow help me to snap out of it. I have been told many times that my feelings about developmental delays will ebb and flow… It’s so true. I don’t know if this crabby phase is an “ebb” or a “flow”, but it’s where I am right now.

This all began (kind of) with the planning of Tessa’s first birthday party, which is in a month. I’m thinking a lot about the milestones that are commonly associated with the first year – walking, using a cup, eating table food, first words – and thinking about how hard she is working and how far away these milestones seem to be. She will do them all in her own time. Today, I just wish that one thing would be easy for her. Just one.

I think a lot of this was magnified by the Thanksgiving holiday and time to catch up with family and friends. I found myself talking a lot about what we are working on in therapy and how she is doing. I have an idea in my brain that people have expectations for what an almost-one-year-old should be like. And somehow, I have convinced myself that if people see her and she isn’t that way, the way they are expecting, then they will feel bad for us. Pity is the absolute last thing I want.

She’s so little! Someday, she’ll have her own personality and talents. They are already locked in her little brain somewhere. Because of Down syndrome, the puzzle is a little trickier to figure out, but her strengths will emerge. Rather than frustration, what I really want to feel is cheers for how hard she has worked and how far she has come. She’s army-crawling. She’s holding her own bottle. She’s mostly sitting. She’s babbling like crazy. It’s progress.

In all of this, I would change nothing. Just as I would not change any of the aspects of myself that I struggle with, neither would I in her. All of this serves a purpose. All of the ebbs and flows and smiles and tears and everything else that comes along with an extra chromosome is part of her role in this crazy world. She and all of us are better for it.

There. I’ve said it. I’m in a funk. But I’m feeling better already.

A little cuteness, perhaps? Just one picture today. It’s Tessa, in a restaurant high chair for the first time, while out on a special date with Mommy and Daddy all by herself. Just try not to smile when you see this face…

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Happy birthday, Dad!

In honor of my dad’s 55th birthday, I present 55 things I’ve learned from the guy who (along with my mom) raised me.  He never reads this blog… but maybe this time, he will.

1. Learn everything you can.
2. Provide for your family. Work hard.
3. Get dressed every day.
4. And for heaven’s sake, wear shoes. (We grew up in an old home that was almost always under construction, so walking around without shoes was a safety hazard)
5. Serve others.
6. Go to church.
7. Take calculated risks.  When I was a little baby, we moved to Paraguay, South America for a little while.  Random, I know.  But sometimes, you have to do these kinds of things.
8. Eat healthy – food is fuel.  (Especially oatmeal) My dad eats oatmeal every day.  With raisins.  And he’ll offer you a bowl, too, if you come for a visit.  Only Ellie ever takes him up on it anymore.
9. When you go to a museum, read everything.
10. Exercise.  Like, every day.
11. Travel, but don’t be extravagant about it.
12. Read the newspaper.
13. Get all the juice out of the grapefruit.

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14. Use tape when painting.
15. Always find the best way to do things.
16. Change your own oil.
17. Cherish family and friends.


18. Give out the good candy on Halloween.
19. Take care of the ill and elderly.  Take them out to lunch.  Visit them when they are sick.  Listen to their stories.
20. Charleston chews taste best frozen.
21. Always have enough beer on hand for a small party.
22. Never mind the GPS, use an atlas.  Every car should have one.
23. When mom is gone, you can survive on tuna fish, hot dogs, and baked beans.
24. Falling asleep in front of the TV is in our genes.
25. Rinse out your recyclables before you put them in the bin.
26. Sometimes, it’s easiest to clean a baby’s poopy butt with a hose.
27. Braiding hair can be a three-man job My sister and I had excessively long hair as children and when my mom was gone, we would help Dad braid it.  Each of us took a chunk of the hair and away we went!
28. Self-propelled lawnmowers are for the weak.
29. Always be a good host (and throw one hell of a party while you’re at it).

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30. Don’t speed.  (Especially when driving a golf cart)
31. Invest in your community.  You’re never too young to join the historical society!
32. Make lists, on post-it notes if possible.
33. Go to the doctor on a regular basis. Get your cholesterol checked, have a physical, listen to your doctor, take your vitamins.
34. Give.  Give time, give money, give support.  
35. Do your best in school.
36. Save your money.
37. You’re never too old to enjoy a children’s museum.

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38. Save your salad dressing containers. They make excellent containers for nuts and bolts, as well as other random household objects.
39. Wear gloves. And a hat.  And boots.
40. When it snows, shovel often…
41.  But also stop to build a snowman.
42. Always seize the opportunity to see your favorite bands when they come to town (especially as they get old).
43. Speak little, but say lots.
44. Watch PBS.
45. Get down on the floor and play with the grandbabies!

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46. Save your receipts.  ALL of them.
47. Log your gas mileage.  (Full disclosure:  I’ve learned this, but I don’t do this.  However, I have at least one sibling who carries on the tradition.)
48. Eating the same meal for lunch every day is efficient.
49. Why buy an expensive picnic table when you can make one in your garage for less money??  And that goes for a lot of things.  Be handy, make your own stuff when possible.  Be a fixer.
50. If they knock down your mailbox,  just build another one.  A metaphor for life, perhaps?
51. Mustaches.  Not a good look.

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52. Write thank-you notes.
53. Insist that others do the right thing.
54. When the work is done and the time is right, take a break and let loose.


55. Practice makes perfect.

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November, in a nutshell

I cannot believe that we are almost to the end of John’s Master’s Degree program. He and I embarked on our journey of earning our degrees when Ellie was 6 months old. I finished 4 days before Tessa was born. In less than a week, John will join the club.  He tells me that, at 67 pages, he is done writing and that all he has left are some citations (which, at this point, I’d really like to just do for him so that it can just be done, but of course, I won’t, because playing with Tessa and Ellie is more fun than researching APA Style). Craziness (and crankiness) hit their highest point last week and we’re coasting into the finish line now… Here are some pictures of life lately…

Did I post this yet? I can’t remember, but it’s worth repeating anyway..

IMG_6659.JPG Trying to stay warm in our most recent snap of cold weather: IMG_6677.JPG     Tessa loves to play “sooooo big!” IMG_6706.JPG   We celebrated my nephew’s second birthday… this is my sister, sister-in-law, and I with our kiddos… IMG_6712.JPG   Sticking out our tongues in solidarity with Tessa 🙂 IMG_6766.JPG   So serious today…  IMG_6762.JPG   A little happier in this one.  🙂 IMG_6734.JPG   The media center at my school is having a “Shelfie” contest… Here’s our entry… IMG_6759.JPG   We put up our Christmas decorations a little early (sorry, Mom) and Ellie decided that Baby Jesus needed a check-up from our dear friend Doc McStuffins. IMG_6771.JPG   Holding her own bottle is super hard work!! IMG_6776.JPG  Sister love. ❤

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11 months

We have somehow arrived at month 11 and I’m feeling more than a little thankful to be past all of the “monthly updates.”

I’ll be honest with you – along with those ridiculous stick-figure families on the back window of 80% of family vehicles, I loathe monthly baby Facebook updates. You know what I’m talking about? Little number tacked onto a onesie, baby sitting next to some board that lists all the stats… Loves peaches!! Great eater!! Hates going to sleep!! Started doing quantum physics!!

Ugh.

(If you do these with your child, please know that I love you both very dearly and this is no reason for you to stop. Please don’t be offended if I don’t read them though. It’s not you, it’s me.)

Really, I don’t think I’ve given you a monthly update in quite some time. I forget, most days, how old Tessa is. The number floats around in the back of my brain and if asked, I can retrieve it. With strangers, sometimes I lie and tell them that she is younger… usually, that’s just easier than having to explain that yes, I know she’s a tiny little peanut and no, she’s not walking yet. But even if the rest of the world is obsessed with how she measures up to her peers, my thoughts about her have so little to do with what she should be doing and so much to do with how far she has come. I don’t really think much about ‘man, you should be standing!’ There are mostly thoughts about how therapy is helping and how much I want to do what is the very best for this girl.

Eleven wild months. Amazing.

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