Society & Culture, Practice & Voice, Uncategorized

Picture Perfect




As January approaches, I often struggle with what feels like an important decision.  What should I do with the holiday photo cards received during this season?  Choices include storing the cards with the Christmas decorations to view again next year, keeping a bit closer such as in an album or memory box, or (bah humbug?) throwing away with discarded paper and tinsel.

During my college years, I spent many hours searching for the perfect Christmas card. This winter ritual involved driving to a small downtown bookstore, purchasing a tall dirty chai from the coffee counter, and looking at boxes of cards promising holiday cheer. The perfect card had many qualities: touching but not sappy, scenic but not overdone, spiritual but not religious, and of course – very different from the year before. In my mind this card would remind people how much they missed me, how life wasn’t the same since I moved away from my home town. Friends and family would smile and think of me fondly, nodding thoughtfully as they pictured me completing another successful semester.

The birth of my daughter changed it all.  The search process simplified … now I just had to select a recent picture of my precious child and show her off to the world.  The background design didn’t matter, the sight of her perfect smile and blond curls aged by exactly one year would be enough to melt hearts and possibly even inspire donations to her 529 college fund.

When my daughter was two years old I became pregnant with my son.  A few months into the pregnancy we received the news he would be born with Down syndrome. My high-risk OB doctor called me at work with the news, stating she had waited until 3:30 PM in the afternoon “so she wouldn’t ruin my whole day.” I knew my husband wouldn’t be home from work for another hour or so, and so I decided to drive to a friends house for support until he came home.  In an attempt to be helpful, she searched the Internet for pictures of children with DS to show me how beautiful they were, but I just cried and looked away.

The first Christmas after my son was born, I was still emotionally tender and mourning the son I thought I was supposed to have … a future engineer, pharmacist, or lawyer (well, maybe not a lawyer.) I planned to celebrate the season with my usual photo card, but a thought crept into my mind. I was new at navigating this journey through special needs parenting, and was concerned that a photo card could cause people to respond to his image the same way I did initially, with sadness, confusion, and or even pity. I never considered not including my son in the photo card, but was still processing the grief that came with having a child with facial features associated with a chromosomal disorder.

I mentioned this to my husband, asking specifically “What if we send our Christmas card to friends and the picture of our son makes them sad?”  This was a heartfelt question accompanied by tears on my part. His response? “If a Christmas card with a picture of our family makes them sad? Well, they can go F*CK themselves.”

If a Christmas card with a picture of our family makes them sad? Well, they can go F*CK themselves.

Oh my. I had no words, just more tears on my part. But rather than feeling sad I started to laugh so hard I cried. While I was busy over analyzing small decisions and worrying about how people might respond to my card, my husband crudely but eloquently stated that none of that mattered. What matters is that my son is perfect, in both spirit, ability, and appearance. His almond shaped eyes squint when he dances to bluegrass, his low set ears listen for Daddy coming home from work, and his squishy nose seeks out the fresh made cookies. He is exactly who he is meant to be, and my cards show the world how much he is loved.

The holiday season has ended, but while it often puts pressure on parents … expectations of travel, shopping, gifting, and more. This year I chose not to try to impress others, but to embrace images of my loving husband and children.  We are not picture perfect, but our family is exactly as it should be.  Now, don’t forget to send me your updated address for next year!  And if you received a card, I might be looking for it on your refrigerator … no pressure.

Follow our journey on www.facebook.com/arlonaut

 

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