Yo soy La Lay

adventures in family, faith, and Down syndrome

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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This Beautiful Life

I only want to write about this one more time before I put this baby to bed.

I am approached by many people who want to know how or why I’m taking this diagnosis “so well.”

I want it to be abundantly clear that Tessa is my baby first.  Sometimes, she is my baby who slept through the night at six weeks.  Sometimes she is my baby who just loves to snuggle.  Sometimes, she is my baby who came a lot earlier than planned.  And sometimes, she is my baby with Down syndrome.

It is not wrong to feel sad, upset, angry, overwhelmed, disappointed, or hurt when you get life-altering news.  My initial reaction was confusion.  I distinctly remember laying my head against the bed, straining to hear what the nurse was saying to John while I was still delivering the placenta (sorry, male readers), and being completely bewildered.  It became very urgent for me to learn what this meant for our little girl (whom I thought was a boy, which made all of this even more perplexing).  But no one ever told me that she wouldn’t live a happy life, so why should I expect that she won’t?

Here’s the reality of Tessa’s beautiful life as I see it:  in very rare instances, a person with Down syndrome may never speak.  And so what??  Is her life not worth living if she never says a word??  How many times have words gotten me in trouble?  How often have I caused pain, hurt, anger, or frustration with my words?  And who would it really hurt if Tessa never speaks?  Me?  What do my feelings matter if my little girl is happy?  What can I really want for her?  To love and be loved.  That is all.

Sometimes, Tessa might deal with disappointment, frustration, and hurt because of her different abilities.  And so will Ellie.  Believe me, both of my children will have to overcome struggles.  If Ellie comes home and tells me that she wants to be a tennis player, I have to be honest, it will concern me a little bit.  I’ve seen her try to walk quickly across a room…. graceful she is not.  However, there’s no reason that she can’t work at it and accomplish what she wants.  That’s how I feel about Tessa.  If she wants to go to college, get married, fly to the moon, am I going to tell her no?  Hold her back?  Stop believing in her?  I have no reason to believe that she won’t be able to do any of those things.  Worse would be to tell her she can’t… or worse, to never have had her to love at all.

I accidentally stumbled into a support group online for women who had terminated their pregnancies for medical reasons.  I was looking for other mom groups for families like ours and it was literally one of those situations where I scrolled and clicked too fast, ending up clicking the link that I didn’t intend to pick.  I will not stand in judgement of these women and their decisions.  I believe that it is between them and God.  But I mourn for those little babies who will never snuggle on the couch with Daddy, who won’t get way too many kisses from their big sister, who won’t have the chance to love simply because of misunderstanding, misinformation, or a lack of confidence to be able to provide for the child.  It is a beautiful life and I am so glad that Tessa is here to enjoy it.

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