A moment that truly glittered.
Evan is 6 years old. She is smart and funny and pretty. She also happens to have and extra 21st chromosome. She has Down Syndrome. This means she has beautiful "upside down moon" shaped eyes with sparkling Brushfield's spots. This means she does and learns things a little slower than her peers. This means she works harder at speech than most Opera singers and harder at gross motor skills than most Olympic athletes.
Mostly having a child with Down Syndrome means the moments that glitter punctuate our daily lives with big firework explosion size emotional exclamation points. Really. I'm not romanticizing Down Syndrome. I'm not trying to make myself feel better. Some things are different. Some things are harder. Those things seem small and silly compared to the light and love Evan brings to our daily lives. Really.
I wasted a lot of time worried about the unknowns and what ifs of having a child with special needs. I wasted a lot of emotion and tears over how hard her life was going to be. I didn't know how awesome it was going to be. We celebrate life. We take every chance to dance, high five and beam at ourselves in the mirror.We got here together as a family. Most of the time Evan leading the way and teaching us how to discard the pretense most people spend their lives fretting about.
She was born at 35 weeks after a wonderful and uncomplicated pregnancy. One of my best friends from childhood was the ultrasound tech in the hospital I worked at. My beautiful fetus and I popped in for a quick look and pictures about every 3-4 weeks. I am a pediatrician. I know what to look for on that ultrasound. I know what to worry about. Trust me Down Syndrome was at the top of my worry list. She didn't have any signs. No worries.
The weekend before she was born I worked a 3 day call weekend. She didn't move much and I went to Labor and Delivery twice to look at her on the fetal monitor. She looked great and I rationalized that I was up and moving around so much she must be snoozing. Monday morning I didn't feel her moving at all. We rushed to our doctor's office and on to the hospital for an emergency C-section.
That day is punctuated with lots of moments that do not glitter. In many ways my darkest day.
The look in Clay's eyes when the obstetrician said "Do not stop for anything. Go straight to the hospital." The moment he realized what I had known all day. That we were in real trouble. Another dark moment as the ultrasound tech left the room after a fetal stress test of 2/10 (only points for heart beat). She looked back over her shoulder and solemnly told us good luck. A moment alone in the hospital room when I knew beyond the shadow of doubt that I would never get over losing my baby.
In many ways my darkest day.
My twin sister Kimmy was coaching volleyball at the time and was at a high school about 2 hours away. She finally got my message and called me. As she was talking Evan started to move. A moment of hope. A flutter of hope. A flutter of little tiny movement and then big strong happy baby movement. I knew then everything was going to be OK. It's better than OK. Life is good. Life is grand. I've got the dancing, high fiving, beaming in the mirror, laughing out loud because you're happy memories to prove it.
A laugh. A smile. Sunlight dancing off the river to shine a light on the light of my life. I just keep thinking of that moment. I just had to tell somebody. I had to tell everybody. I got it good. I got the prize in the Cracker Jack box.
in a quiet soul, in a peaceful mind
treasure does lie
there for the taking
if we take the time
A walk with your Mama
A sister's embrace
the laugh of a dear one
the curve of her face
this time we spend races by
and barely leaves a mark
except on the stories
we tell in our hearts
~Carmen
Love your writing. I met you last year at the Maya Angelou event. Just wanted to say hello :)
ReplyDeleteLife is full of moments that glitter, especially with a blessing like yours. I look forward to hearing more from you. By the way, I am from Sylva as well. We live in a beautiful place. :)
ReplyDeleteSo lovely, Carmen. You have so many wonderful gifts. A awesome pediatrician, a talented photographer, an expressive writer and loving Momma of a special child.
ReplyDeleteHey Dr. :) Carrie Scharf here....just wanted to say hi and tell you Jacob is doing great. His surgery was at Duke at 4 months. We were there a month. One day soon I'll write about it on our blog but I just cry when I think about it! But now he is doing great and rolling around and eating squash :-)Hope all is well!! You can see a picture or two here http://scharfreport.blogspot.com/
ReplyDeleteThis reminds me of when we found out that Maura Anne had Down Syndrome. There were 5 of us ahead of her. I was 8½. The pediatrician came to our house to explain this dx to us nd be there to support Mama and Papa - Maura was still in NICU. After informing us of the dx, every one of us kiddos began sobbing uncontrollably. After a bit, I stopped crying, walked to Dr. Lessa, Sat in her lap, and asked what exactly it was! From there, we all switched to hysterics! Like you said, it just means they are a bit different. Maybe slower. But all in all, no big deal :-) I love your words, and your story. Thank you for sharing! XOXOXO
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