Yo soy La Lay

adventures in family, faith, and Down syndrome

Pity

on February 13, 2014

Tessa had her first eye doctor appointment yesterday!  There are a variety of eye issues that kids with DS are more likely to have.  Most commonly, we’re talking about nearsightedness, but they also check for glaucoma and cataracts, cross-eyes, and clogged tear ducts.  Clogged ducts are common in all newborns!!  Tessa has one, as did Ellie, but she passed the rest of her exam with flying colors.

As a part of the exam, Tessa had her eyes dilated.  Because of the weak dosage used on little babies, we had a considerable wait before she could be seen.  The eye doctor’s office has a “special” waiting room for their children (though I wonder if they just keep us separate to keep the other patients less cranky!).  Another mother in the room was holding a little boy who looked about 6 months old and she struck up a conversation with me.  This seems to happen to me a lot… I know the life stories of a lot of strangers and Gina was ready to tell me hers, too!!

As the conversation continued, she told me about her little boy, Robby.  Remember that I thought he looked about 6 months?  Well, in actuality, he was 14 months.  Robby had been born without a left kidney, without a left lung, and with severe heart defects, all of which had not been diagnosed prenatally.  When she brought her concerns to the doctors three weeks after his birth, she had been dismissed and it took considerable effort for him to receive any care.

(As a side note, this story was so unbelievable to me that I came home and googled if someone could survive with one lung.  It is possible.  In fact, the Pope only has one lung!)  

 Robby takes all his nutrition through a feeding tube, has had heart surgery and multiple hospital stays.  She told me about how he is now terrified of doctors, how he can’t sleep more than an hour at a time, how she feels like she is neglecting her five other children… my heart ached for this woman!

As the conversation eventually turned, Gina wanted to know why I was sitting in an eye doctor office with a newborn baby.  Not thinking much of it, I just told her that Tessa has Down syndrome and needed to be checked to make sure her eyes were working.

I will never forget the look on this woman’s face.  She looked so sad!!!!!  And I was tongue-tied.  How to respond??  I’ve blogged about this before – that this is not a sad event for us, that we don’t feel hurt or lost… maybe a little confused or overwhelmed at times, but never sad!!  And yet this woman, with the weight of the world on her shoulders, was feeling sad for me.  How does one communicate this joy that we feel to a stranger?  So I just did what any other new parent would do…. I stammered through some kind of weak response and then pretended that I had just received a text message and excused myself from the conversation.

If you’re waiting for me to say something like “just kidding! I was an advocate for Tessa and others with Down Syndrome!” you’ll be disappointed to learn that I literally did pretend to get a message.  And today, I find myself trying to decide how I will approach people with this reaction in my future.  The fact that in some areas of the country, 80-92% of babies prenatally diagnosed with DS are aborted weighs heavily on my heart.  How can I show others what a blessing this will be?? 

As Gina left the office with her son, she whispered “good luck” to me and gave me a look that said “I am so sorry for you.”  She meant no harm by this, I am sure, and her family is certainly in my prayers today.  But “luck” isn’t what my family needs.  Support is a better word, maybe, and the countless messages of love, hope, and encouragement that we have received from family and friends have made it abundantly clear that we are not lacking.  We have a community behind us!!  My hope is that Tessa’s community will be touched in such a way that people learn to see all babies as blessings in the lives of their families.  Just look at this smile!!  How can you not adore it?!

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5 responses to “Pity

  1. Aunt Kelly says:

    When I tell people about Tessa and how you all are doing with it, most people can’t understand it either. You probably don’t, but I remember talking to you about this the day she was born, and this is how I explain it. Everybody has something they struggle with. Everyone has their own unique problems. Tessa is no different. As a parent you just have to adapt to the needs of your child. Its not something to be sad about because she is a beautiful baby and has already enriched the lives of people you dont even know, and she isnt even 2 months old yet. How can you be sad about someone who has beautified our lives in such an amazing way?
    She’s a pretty amazing kid.

  2. Maggie says:

    I am so very proud of you and John and all your families around you.Tessa will be a blessing to you all. God does not make mistakes and He know Tessa will be wonderful testimony as she grows and responds to your care.Love you….GG

  3. Julie says:

    You and John are amazing parents and your love and acceptance is obvious. God granted you a gift and Tessa is proving to be just another happy Lay baby. She is as blessed to have you two as you to have her. Thank you for your blog, the updates and your gynormous HEART❤️

  4. Kristi Moran says:

    You are going to touch so many lives through your story and your perspective on life! I am so proud of you and who you have become and it gives me such joy reading these posts!!!

  5. […] There is a statistic often shared in our community, most especially by new parents, who seem to have “chosen the unthinkable” by going through with a Down syndrome pregnancy.  The statistic is that 92% of women abort their babies when they find out that it has Down syndrome. Yes, I even (sort of) referenced it back in the “early days.”  […]

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