Thoughts on Down Syndrome Two Years Later

 Before I post about the one rockin' celebration that is happening next week for Willow's second birthday, Josh's 30th birthday, and our 6th wedding anniversary, I thought I would touch on Down Syndrome two years later.  There was a time when I felt sure I would think about Down Syndrome every second of every day for the rest of my life.  I was convinced that, not only would I think about it, but that I would never stop feeling sad about it.  Surprisingly two years later I think about it much less than I had anticipated.  And these days, I often do not think about it at all.  And when I do, I rarely feel sad.

See http://www.beadsofcourage.org/ to read about what these beads represent.

The times that I feel sad are the times when I forget to let Willow take things at her own pace.  I allow comparison and impatience to rule my heart, and I start comparing her growth and development to that of her peers.  I forget that with parenting, as with most places in life, comparison is the robber of joy.  I have to tell myself in these moments, slow down, take a deep breath, what is the rush?  Celebrate the steps no matter when they come. Stay hopeful, work hard, but chill out.

There are other times when I feel sad about it thinking of the hardships she has faced already and the hardships that are likely to come.  I feel sad when I hear the word retard used casually and flippantly. I feel sad when I think about the possibility that someone might one day make fun of her, leave her out, or underestimate her because of the way she looks. Then I remember that I will hopefully raise her to be tough. Hell, she is already tough.  I will raise her to challenge people's stereotypes and love people even when they do not deserve it, because that is what Jesus did. I will work on educating people that retard is not a word to be used as an insult. And besides, I'm pretty sure all of her Ukrainian cousins will beat up anybody who messes with her, and I promise you don't want to mess with Eliza.

Though occasionally I still feel sad, there are many days when I don't even think about Down Syndrome at all.  I forget all about it, because it is only one part of our family.  It does not define her, and it does not define us.  She has beautiful blue eyes.  We have no idea where they came from.  Josh likes to say the mailman.  She has a winning smile, a great sense of humor, and loves dancing and music.  She has long eyelashes like here dad.  You're welcome, Willow.  She has straight, thin hair like her mom.  Sorry, girl.  And she also has a third copy of the 21st chromosome.  Willow eats, laughs, and plays, just like other children.  Just like other families, we take walks around our neighborhood, cook dinner, and go to the beach.  We have some extra challenges but who doesn't?

I used to think I would change it.  That if I could, I would erase Down Syndrome from our family.  I now feel differently.  I would, hands down, change out her heart for another heart that had never been broken. I would trade in her bowels for normal, working bowels. I would trade in all of the medical problems, absolutely.  But would I take away the Down Syndrome? That would be like saying I would trade her in.  It would be like saying I want a different baby, and I don't.  She fits perfectly in our family, and we love her just the way she is. Often times I think that other babies are the ones missing something.  Maybe we are all missing something.  We are the ones missing those beautiful, exotic almond-shaped eyes, extra neck skin for snuggling, or the cute extra space between her toes.  We are the ones who are missing the ability to smile, not just with our mouths, but with our whole entire face and dance without inhibition.  We are missing that extra sweetness, that extra cuteness, and that extra charm.

Is it hard, yes.  Would we change it, no.  Josh and I have both been changed forever in all of the best ways.  We are the Wickers.  We are a bit eccentric (I am pretty sure that is the polite word for weird), but as many of you know, we were like that long before Down syndrome entered our lives.  I will keep talking about Down Syndrome, not because it defines us, but because I hope to help readers think about people with Down Syndrome in a way that they have not before.  I hope to help people realize that folks with Down Syndrome have so much to contribute to society.  Read about Christian Royal, a potter (www.christianroyalpottery.com/).  Read about Tim harris, a restaurant owner (http://timsplaceabq.com/).  Read this letter where John Franklin Stephens smokes Ann Coulter on the word retard (http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/).  But I also hope that we realize that a person's value is not measured by their contribution  to society but by their humanity alone.   It is measured by the fact that people with Down Syndrome, like all of us, are made in the image of God and beloved by Him.

Happy birthday, Willow.  You are the best thing that ever happened to your dad and me, and you could not be more loved.

Love always protects, always trusts, always hopes, always perseveres.

(I Cor. 13:7)

What makes you different makes you beautiful.

(Yes, this is the Backstreet Boys, but I thought it was pertinent.)