21 March 2017

World Down Syndrome Day 2017!

Today, my friends, is World Down Syndrome Day! A person has Down syndrome when they have three copies of the 21st chromosome, so we celebrate on March 21 (3.21)! Today is the one day a year I like to shout from my rooftop. I thank you sincerely for the use of your ears on this day. And (this one is for you, Aunt Ellen!) you absolutely have my permission to send this post on to anyone you like; I am flattered and humbled if you think my words will be of benefit to anyone else.


I am starting to forget the past. I can’t remember what day Abigail had her heart surgery. August something. I have to look up in my old planner a day that used to be burned in my memory, a deep scar I thought I would remember forever. But every August something, I forget that I wanted to make a heart-shaped cake and celebrate a Heartversary. Lots of times, I can’t even remember all five of her heart defects anymore. Scared, Depressed, New Mom Jacqueline used to doodle pictures of anatomically correct hearts, then add in Abigail’s defects in case we gave birth in a new state before our medical files could reach us. I even wrote a book about it, and I still can’t remember all her heart defects. I am starting to forget the names of the techniques we used in therapy. There was this really good one that her speech therapist in Chicago taught us - it was so great that I still use it with my kids and with friends’ kids, but try though I might, I can’t remember what it was called.


There was a lot of pain in the beginning. A lot of hurt and bitterness and depression that I had to work through. I used it as fuel when we practiced physical therapy during the week or when I needed to fight to get Abigail’s insurance to cover something. I must have used up all the bitterness as fuel because now I’ve found room to paint over the past with big, glossy brush strokes of happiness. I remember Abigail’s first sign - it was “more” and it was for Goldfish crackers and she was 18-months-old. I remember how much she loved the water when we lived in Florida and how much she loved people watching from the baby carrier I wore in Chicago. Abigail still loves books and when Theodore chucks one across the room, I remember how little 5-month-old Abigail would sit very still in my lap for a very long time while I read every book on her bookshelf.


I’ve even managed to romanticize the painful parts with my sparkly paint brush of joy. Like that time at the ice cream shop when the clerk gave all the other kids a balloon but not Abigail. I look back and I remember how it was just me and her! Against the world! We were a team so strong and so loving that the world couldn’t bring us down. Maybe time healed my wounds. Or maybe the epic mess Abigail made in the basement just distracted me. You know, real life stuff.


I like to remember how much I forgot when I read my old blog posts and journal entries. I hope in five-and-a-half more years I’ll forget some of the struggles we are going through now. Like how I feel like we’re never going to get Abigail out of diapers. Or how every time she walks by a table with stuff on it, she sweeps her arm across and knocks it all off. All of it. Every. Time. Sometimes it’s difficult, going through right now, and a little scary at times, like talking about her spinal issues or waiting for the results from her blood work every six months or not knowing how the changing politics will change the opportunities available at school. But I know now that in a few more years, I’ll probably have to re-read this letter to remember it. I’ll just remember how she has memorized 22 Elephant and Piggie books. Or how she sings “Hallelujah!” really loudly, two beats too late at church every week. Or how she dances when she finds out she gets to do something really fun. Or how she high-fives herself if someone leaves her hanging. Or how she asks, one-at-a-time, her three blankies which episode of Sophia the First they’d like to watch and reports the answers to me. They usually want to watch the same episode as Abigail.


I forget because Abigail is a growing, changing person with complex thoughts and developing interests. Abigail keeps giving me these new joys to experience. I am slowly forgetting what it was like to be Scared, Depressed, New Mom Jacqueline holding a tube-covered baby in the PICU. I’m too busy reading Blondie her favorite book again, repeating the lines until I quote them to her satisfaction.

1 comment:

Aunt Ellen said...

Love your pics and your memoirs! You are an amazing mother!! Love, Aunt Ellen