Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Doctor Bowles

Dear Dr. Bowles,

You did not diagnose Tessa – that is another story for another person and another day.  However, you have been my OB/GYN for many years now and I was lucky enough to have Tessa on your watch.

My labor with her was quite quick, and as I recall, you were supposed to be off the clock about an hour before she was born, but you stuck around to see it through.

Much earlier in the pregnancy, when we discussed prenatal testing and I declined, you did not push.  And then later, when we had our 20 week ultrasound, as you read the results, I very distinctly remember the slightest furrow in your brow and asking again if we had prenatal testing.  At the time, it did not phase me, but when Tessa was born and she was diagnosed, I wonder if you might have had an inkling back on that day.

While the NICU team checked her out, you helped me finish laboring and chatted with me while we processed what was happening.  “Ya know, kiddo,” you said, “who is to say she’s not going to be just as happy as anyone else?”  And you went on to tell me a story about a family member who worked himself to the bone and then died within a week of retiring.

“She won’t do that, you know… she won’t work herself to the bone.  She’ll be happy.  You’ll be happy.” you told me.  We are happy.

I learned recently that you have retired.  I’m a little sad, because if there are any more babies, I will have to see some other doctor… but I’m also so happy for you, because you’re able to be out, enjoying life, happy as a clam with your family.  I hope you are soaking in every moment.  Congratulations!

Maggie

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

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On abandonment

We’ve all seen the latest story that is trending on Facebook… you know the one, the story of the father who is (allegedly) choosing to raise his son, diagnosed with Down syndrome at birth, in spite of the mother’s choice to (allegedly) abandon the child.  You can google the story if you haven’t seen it already.  I honestly can’t decide if any of it is credible enough to merit a link.  What I will say is this:

I will not demonize the mother for the choice that she seems to have made, nor will I canonize the father for taking his son to New Zealand in search of better opportunities.

While the choice to leave my child to be adopted in the face of her diagnosis is clearly not the choice that I would make, understand that I am part of a strong and loving marriage, we aren’t rich, but we are comfortable enough, and we have the support of family and friends.  Sometimes, the most loving thing that a birth parent can do for her child is to recognize that she is not in a place to provide what is needed.  And there are many loving families desperate to welcome a child into their homes.

More importantly, I beg you, do not be naive enough to think that these very scenarios do not play out in hospitals across the United States.  Many doctors (thankfully, not mine) deliver diagnoses like these as if they are devastating, miserable, horrific occasions.  It’s not just Down syndrome – any deviation from the neurotypical path is scary, but it does not have to be a death sentence.  And while the gender of the ‘parent who stayed’ is often reversed, there are relationships that fall apart in the face of all kinds of adversity – including the strain of a child with special needs.

We will commend the father for providing for his son, but have we abandoned our own?  Will we invite the little boy with Down syndrome in our son’s class to his birthday party?  And then truly and genuinely allow ourselves to see him as just another 8-year-old boy?  Will we set up a playdate with the neighbor’s daughter who has autism?  Will we accept a child with a severe learning disability into our classrooms and do everything we can to support his desire to learn?  Do we refuse to abandon the children who live in our own community?  Without patronizing, without any air of superiority or feeling of having done a good deed… if you want to make a difference in this world, this is your chance.

Pray for the families that struggle under the strain of a world that has not yet found a way to embrace their child.

Encourage inclusion, acceptance, kindness, and compassion.

Let your actions serve as example to others.

Choose love.

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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.

– – – – – – – – – – – – – –

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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