Yo soy La Lay

adventures in family, faith, and Down syndrome

This Beautiful Life

on February 21, 2014

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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3 responses to “This Beautiful Life

  1. Peter Sakash says:

    I’m fairly certain that you don’t need to be “graceful” to be a tennis player. I don’t think anyone would ever consider me graceful by any stretch of the word. However, if Ellie wants to be a tennis player, let me know. Now I’m going to go sob into my PB&J about not being graceful….

    Pete

  2. […] I made someone mad when I wrote about Tessa’s beautiful life and how I was so glad that she was born.  I didn’t ever think I would get a response like […]

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