3/21 - World Down Syndrome Day

March 21^st is World Down Syndrome day. It’s one of those days where the bloggers of the world jump onto the internet to make sure that everyone knows how fantastic the Trisomy* 21 community is. It’s one of those days where I’m guaranteed to smile as I read the stories – seeing bits and pieces of Abigail in all of them. I had this idea that this year I would be one of those writers – yet I’m having trouble figuring out what to say.

The truth is that Down Syndrome is such a tiny piece of how I see my daughter, it makes focusing only on that piece very difficult. Yes, she has 47 chromosomes when most other people have 46. Yes, she’s in an Early Intervention program to give her the best possible chances of success later in life. Yes, she sees a few more doctors than most kids. But to me, to my husband, and to most people who know our story, she’s our wonderful unexpected gift.

 Abigail is my miracle baby – my daughter that modern medical testing said wouldn't survive to the end of my first trimester. She’s the preemie who arrived six weeks too early and got to have surgery when she was exactly 24 hours old. She’s my little fighter who has defied every doctor who has tried to suggest a negative outcome for her health and life. She’s a loving sister who thinks her brother hung the moon - and she’s determined enough to make sure he never leaves her behind. She’s a sharp mind that takes in 1000 times more information than anyone realizes – and who is quickly learning that being cute will get her far in life. But mostly she’s big eyes, a giant smile, and a loving hug at the end of each day.

Down Syndrome as a whole can be a scary topic. But I honestly believe that’s because every person who welcomes one of these wonderful babies into their family is facing the unknown. And the unknown is terrifying. But each child’s future is unknown – regardless of genetics – and every child deserves to be celebrated. On March 21^st our family celebrates Abigail – my wonderful gift who happened to come with a little extra.

*I love that the dictionary keeps telling me that Trisomy is not a word.

Mornings

Morning routines are important. Each family develops their own rhythm, their own flow that works best for them. I know of some families that have mornings down to an exact science with each member knowing exactly what they have to do in order for everyone to leave on time. We are not that family. The only way to describe mornings in our house is chaos. A good day is when the words “We’re going to be LATE!” are only yelled once. This is not to say I’m not trying to find a schedule that works – just that when you have two children who get up 2-3 times each most nights out of a week – schedules tend to be fluid.

So you can imagine my surprise when I woke up in the morning and realized that not only had my alarm not gone off yet but this was the FIRST time I had woken up since going to bed the night before. Most people would probably bask in the glow of a successful night; enjoy having a couple of extra minutes to lounge before starting the day. I am not most people. My first thought – check and make sure they’re breathing! OK, everyone’s breathing – wait for the heart rate to return to normal and proceed with the regular morning routine, doing everything incredibly slowly and quietly as not to wake anyone up.  Twenty minutes later you can guess what happened – yep, I was behind schedule once again. Turns out that not waking everyone up earlier than usual is great – until it makes  all tasks take three times longer than they should and results in everyone being late – again.

In the midst of this terrible realization I heard little feet running out of my daughter’s room. “Mama-mama-mama! Mama-mama-mama!” She keeps yelling until she sees me. Then she stops, grins and points at herself. “I nigh-nigh! I GOOOOOOD nigh-nigh!” It probably says something that she’s so proud of herself for sleeping all night. Like MAYBE her mother begged her to “PLEASE stay asleep tonight!” when she was going to bed the night before. But hey, it apparently worked. Another thing that seemed to work – putting the 2 year old in charge of waking up her brother. I’m sure he didn't appreciate the slobbery kisses wake-up call, but he WAS out of the bed and at the table in record time – AND he managed to get to school a whole ten minutes early. Guess I’ll see what works tomorrow, the baby may have a new job as an alarm clock.