Yo soy La Lay

adventures in family, faith, and Down syndrome

Reflections from Dad (on his daughter’s first birthday)

Today is THE day.  And while I’ve spent the last year telling people the wrong date over and over, I’m sure I have it right this time. Tonight’s reflection comes from John.  As I write this, he is hanging out with Tessa on the couch across from me and she is over-the-moon happy.  She adores this guy (like we all do).  He told me “please don’t write me a big introduction,” so I won’t.   Here’s his side of the story.

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Three things to never say to your wife when she tells you she is in labor:

  1. “You can’t be in labor…I have to go to work today…”

(10 minutes later the pain starts to kick in…I nonchalantly utter the following)

2.“I’ll just run into work and set some things up…you’ll be ok here by yourself with Ellie, right?”

(20 minutes later I place a phone call…I have an important question for my laboring wife)

3. “I’m on my way back from work, do I have time to get a coffee?”

Long story short, I was an idiot for putting my work ahead of my wife and unborn child, even if it was only for a brief hour.  I wish I could go back and hit the illusive redo button on that moment in my life and be a caring and compassionate husband.  Live and learn, right?

When Tessa was born there is a moment of her birth forever ingrained in my mind.  Right after she was born she was taken to the table to be inspected by doctors and nurses from the NICU because there were some concerns during labor. I distinctly remember when one nurse from the NICU looked at me and it was at that moment I knew something wasn’t as it should be.  I will never forget her face, one of sincere pity, one of fear; without saying a word, she said it all.

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The nurse practitioner, Amanda, called me over and explained to me they saw many markers for Down syndrome.  She walked me through all the signs and calmly explained to me that there was no way to know until she has genetic testing.  After our discussion I said to her, “Is this something that is certain or is there a chance she doesn’t have this?” My mom had always taught me: In life it is wise to prepare for the worst and hope for the best… but her response didn’t make me hope for the best.

“Again, there is no way to know without testing, but if I would be shocked if she didn’t have it.”

I’m glad she told the truth… and I wasn’t in denial… but I really was sad.  In my arms was a child, who I was supposed to just instantly love, and I couldn’t even see her beauty because I spent all my time examining her trying to make sense of this diagnosis.

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People say you love your kids from the moment they are born.  That instantly you become this whole new person who is filled with a unique parental love.  Yeah… for me, that’s a lie.  I contend loving children is a process.  When Ellie was born, I was surprised that I didn’t feel any different.  I mean, I liked having her around and I could honestly say I loved her, but it wasn’t this transformational moment.  Instead, loving your kids is a process.  They grow on you…like a fungus.  Ok, maybe not like a fungus…but the truth is, you learn to love them as they grow into themselves.

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Loving Tessa was a process.  I think I should clarify that I cared for her, but seeing beyond her diagnosis and seeing my beautiful daughter took time.  But with every smile, every giggle, every milestone, she has just made my life so much richer.  Both of my girls have made my life so much more meaningful and they both have taught me more than I have taught them in the few years I have been working on this parenting gig.

Ellie has taught me how to have fun and to laugh (and honestly she has taught me what it’s like to be on the other end of smart aleck remarks because she’s already dishing sarcasm at age 3).

Tessa has taught me to love unconditionally and that everything I thought that mattered… didn’t.

Together… they remind me everyday to 1) laugh often and 2) focus on what matters.  What else do we need to be taught besides how to cope with terrible sports teams?

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In this end, just like I would hit the reset button on my response to Maggie that morning, I also wish I could hit the reset button on Tessa’s birthday.  If I were to do this over again I would just hold her without fear, or disappointment, or worry… Instead I would hold her and say…

“Tessa, thanks for joining us and thanks for being exactly the way you are… you are what we always prayed for, even if we didn’t know it…”

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“…and by the way Tessa, if it’s not too much trouble, can you talk some sense into your sister?   Because she needs it.”

Her eyes would say it all: “Dad, I’m a miracle…not a miracle worker”

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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 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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