Stream of Consciousness: New Year’s ThoughtsPosted: January 3, 2014
I’ve sat down and started half a dozen posts about the holidays, the end of the year, our family’s life in the past twelve months. Nothing really came.
I’ve had a little bit of a hibernation the past few weeks. A combination of needing a social media break (when your kids start playing a game called “I have to check my messages”, it is time to look at the ol’ priorities), holiday madness, and smidgen of depression.
I always get depressed in the winter. When I was younger it was an awful, debilitating, gripping kind of depression. Now, it is more like walking around in a vat of emotional jello. Things get harder, and I just want to slow down and stop. Not in the smell-the-roses kind of way. More in the stay-in-bed-all-day kind of way. I feel just like the winter sun, wanting to rise higher in the sky but just never mustering enough to get there, so I just coast along a low arc, day by day.
Thankfully, I’ve got three small people who remind me every morning that they are in dire need of breakfast and Hello Kitty underwear (no, the plain white ones simply cannot be worn except in emergency) and braids and nursing and diaper changing and hugs. So life goes on, but yours truly is just a little deflated until the sun gets a little higher in the sky.
I wasn’t actually going to write about this year, but something happened that changed my mind. Yesterday, a woman at the park approached me and asked me if LP had Down syndrome. I said yes, and she told me that she’d just found out her baby has T21. She was just at the end of her first trimester.
I think I will probably now always associate the winter holidays with Down syndrome’s entrance into our life, and now I’ll probably always remember that mother in the park. They’ll be bookends of the first year I’ve experienced as a parent of a child with Down syndrome.
I remember sitting in our living room on New Year’s Day, holding LP, and knowing intellectually that one day the moment would become an old memory, but I just couldn’t fathom it. How could I go on into a future whose shape I didn’t recognize? Time could move on, but would I? Would this little bundle in my lap truly grow into an adult one day? Nothing seemed guaranteed, nothing certain, nothing real.
This mother was obviously sitting in a very similar moment to mine one year ago, trying to imagine a future but coming up blank. Trying to recreate hopes and dreams but not fully believing it would be safe to do so. I sat grasping for words and nothing seemed right. Our life was just one life with Down syndrome. Our story couldn’t possibly hope to explain it all, we were just one family.
I found my thoughts going to the hundreds of families I’ve met in the Down syndrome community. They are all over the country, the world. Liberal, conservative, young and old. First time parents, families of seven and eight. All kinds and combinations of race and ethnicity. Straight and gay. Some are wealthy, some are not. Everyone has a close connection to someone with Down syndrome.
So I got my phone out and showed her pictures of babies learning how to crawl. I told her about little girls riding bikes, sleepovers, going to high school. First day off to college. Children learning sign language. An adult who wrote her own book, others who sell their own art and photography and pottery. Couples getting married. An artist who never used any verbal communication but spoke through sculpture.
I didn’t hide the hard parts. I told her about the babies I know in the hospital. Told her about a mother I met who lost her baby at a very young age. But I made sure to tell her that not a single one of those mothers seemed to have any regrets. Their stories were full of singular, unconditional love.
I also told her stories from before the babies had ever arrived. I told her about the mother who dreamed about her baby with Down syndrome before she’d even been pregnant with her. The mother who miscarried three times before finally carrying to term a baby who happened to have 47 chromosomes. The mother who had done the same non-invasive prenatal screen whose results were a false negative. Twins, triplets, adoptions.
It was beautiful. All that life, struggle, love, celebration, tears and laughter. I think she felt it, too. She seemed a little lighter when we parted ways. I certainly felt lighter.
It was good to remember that my year was not only about me and my family, but about our friends and family as well. Hundreds and hundreds of families whose stories happen to intertwine with ours. I’m so grateful that I have so many stories to tell. Each year we add a chapter to our stories. Each story is a miracle.
Happy belated New Year’s, from us to you.