Stream of Consciousness: New Year’s ThoughtsPosted: January 3, 2014 Filed under: Down syndrome, emotional stuff, personal growth | Tags: 2014, diagnosis, disability, Down syndrome, New Year's, Parenting, pregnancy, Trisomy 21 42 Comments
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.
Wonderful post. If more people had the experience of speaking with an expectant mom, the way they express their views about Down syndrome and prenatal testing would benefit.
Thank you. :)
mmm mmm mmm… I just want to eat this post up. I love your analogy of being like the winter sun. I am the same way. Right now, the sun is shining and it looks deceptively beautiful. !2 degrees is not beautiful, no matter what. Missed you. xo
twelve not !2. Either way, it sucks. :)
Haha! See this is why I live in California. And even here the winter sun just has no oomph. Brr. 12 degrees. Cold just thinking about it…
So glad to see you back. This was a beautiful post and brought me to tears a couple of times. Your message is so honest, helpful and poignant in so many ways. Thanks for sharing…sending virtual sunshine and warmth your way.
Thank you! I will take all sunshine, in whatever form I can get!
I should be writing before Micah wakes up from his late nap but I’m on your blog instead. Well, actually, I should be folding laundry but ya know what I mean. First of all, I understand about your winter depression. As a young gal, I got more of a Summer Anxiety and a Winter Melancholy. Actually, those could very well be the name of Korean dramas. When school let out for summer vacation, I felt like my world stopped turning, since my parents would be working lots per usual, I would be left alone with my many many thoughts and feelings. What were my classmates up to? Were their hearts beating fast too because uh, what now? No more school?
And my story with depression – don’t wanna do my own blog post here in YOUR comments but dag, I feel you. Especially now as a mama, I can’t afford to be Depressed with the dreaded capital D, only deflated like you wrote. Actually, around the holidays, starting Thanksgiving, they may have seen me retreat into my room a bit too much when their dad was around to relieve me.
Sorry – this is already too long even after I said I ain’t gonna actually BLOG in your comments section. Thinking of you, even before this post…
and oh yeah, your post made me tear up. maybe it’s too much to express between “friends” who ain’t never met but i’ve missed you! Happy 2014…supposed to be Year of the Horse. dunno anything about that ddee.
Yeah I got the summer anxiety too, same thing, long hours hanging out at my parents’ cleaners. You’d be surprised how many games can be played with a pile of wire hangers.
Happy 2014 to you too, mama. Never anything too much to express in a blog comment. Why else do we have blogs after all? ;)
reread your blog post. loved the part about the winter sun.
and how blessed that mama was to run into YOU of all mamas. “so how is it?” is a loaded question. i stopped asking folks with three or more kids what it’s like bc it seems to be a hard question to answer. did you mention your blog to her?
I didn’t mention the blog, or get her number…! The blog, I never seem to mention to people because it sounds so self-promoty. I think that is me being sheepish though. I wish I’d gotten her number, but I have to think that if it is meant to be, we will bump into each other again!
I love you Jisun. I love that your family is a part of my greater extended family (be it cliche or not). And I love your children as fiercely as mine own because they could be. That’s why this Ds community is close because we realize none of us are really that dissimilar. Does that make sense? We have stories that sound earily familiar in their essence. This was a gorgeous post and I know the mama who was probably scared out of her mind to even ask you about LP walked away at least feeling hope.
Oh, mama, I love you right back! Yes, I absolutely know what you’re saying, we are all cut from the same cloth! xoxo
Simply beautiful post………you have such an elegant way with words. Welcome back!
Thank you, it’s good to be back! <3
Welcome back! Thank you for such an eloquent post that so aptly describes this past year for me too. We certainly have all come from different walks of life, and our stories are unique, but our common bond is strong and I love it! I can understand the need for the hiatus and I only have one kiddo, but I sure missed ya!
Thanks mama! Different and the same, right? Might be my new mantra. ;)
Thank you for sharing your story, itv was an uplifting thing to read this morning.
Thank you! I just checked out your blog, we are close, eh? High five for the Bay Area. :)
The things you write. They always manage to hit me right in the heart. I love your descriptions of all the families you’ve come to know in the Ds community. And I am so thankful that one day, about a year ago, I received an email from you, telling me that you suspected your baby had Ds and you had found my blog. I’ve grown really fond of you! So glad to know you, Jisun.
I’m pretty fond of you as well, lady. I’m so glad I sent that email. Who woulda known? Sometime the internet sucks, but sometimes it is really, really awesome. :)
I’m so glad to have found your story, your life and family to intertwine with ours. Beautiful post xx
Thank you, mama. I’m so glad to have found your family as well! <3
Love, love, love! I’m so glad for that mama that she found you at the park. Happy New Year!
Thank you! I’m so glad we found each other too, it was good for all. :)
Imagine that mama in the park going home to her partner & telling them all about what you shared….You planted the seed and from there it grows..
Thank you, I like that seed idea. :)
Beautiful. I’m proud of that woman in the park who approached you. I was never brave enough to do so, never brave enough to ask questions. That’s one reason I talk (and talk and talk) so much about Down Syndrome. So that people like me who are too shy to ask hear the answers and stories they need anyway. Thanks for writing.
I had a parallel experience last year, I saw a little boy at the park but didn’t have the courage to say anything to his mom. LP was brand new, the diagnosis was brand new. I wish I had said something because now I know that she probably would have been happy to talk to me. So this mom in the park seemed like an answer to that experience for me too. We need a secret handshake!
Thank you! :)
Oh my goodness lil mama, you are a beautiful soul.
Shucks. Love to you, mama. You’ve given me so much this year, thank you. xo
This is absolutely beautiful. Well said, well written, well done. Will definitely come back and visit again!
Thank you! Glad to hear that you’ll be back, I guess I’ll have to post again, huh? ;)
So right on! Beautifully written, and helped me SO much. Thank you, and Happy New Year to you and your beautiful Fam.
I’m so glad it helped you, that means so much to hear. Happy New Year to you too!
I just love this. Read it again for the third time and it’s really beautiful. Tell people about your blog when you meet them, (was just reading through the comments). I felt really weird about it when I started work but most parents have told me that they appreciate knowing the story behind the person they have been speaking to.
You’re right, I probably could tell people. It might sound odd, for someone who has a blog, but I’m really pretty shy!
Very very powerful post, a post which truly is a ray of sunshine on a grey drizzly day. So very glad the mum to be found you. Thank you for linking to Downs Side Up. H x
First off Jisun, you are one of the most beautiful people I have virtually met.
Secondly, Can you please ask your kids how you win the “I have to check my messages” game, cause…I need to know.
Shucks, Mardra! Way to make me feel sheepish. I wish I could reach out and give you a big ol’ hug. I’ve learned so much from reading your writing this past year.
As for the game… I’m pretty sure you win after you ignore your mother for the sake of the messages. Or is that losing. Hm.