As Down Syndrome Awareness Month (or as some of us like to call it, Down Syndrome Acceptance Month) is wrapping up, I realize that I haven't said very much of what I'd hoped to say. There just hasn't been the time, or sufficient sleep to string thoughtful words together in the small windows when my girls are sleeping and I am not. It has felt overwhelming to post something every day, and so much of what I've posted has been light. I've been trying to put together a way to sum up what I really want to say. But my ability to provide enlightening or profound insight feels flat, and so instead, I want to re-share something I wrote in February of this year, shortly after Cora's fourth birthday. It pretty much sums up our life as it is... busy, messy, exhausting, sometimes overwhelming, and still beautiful.
The other night I had the rare experience of lying down with Cora at bedtime. Usually I am in charge of the wee-one, who still wants only her mama at night, and has a pair of lungs that can easily keep her older sister from drifting off to dreamland.
I held her little self close, and smoothed her hair, whispering to her made-up-on-the-spot stories about Cora and Ruby and listened to her giggles. After the days of listening to her argue and yell, always wanting to do things in her own little way, which seldom really jives with the way it works best for me... well, that little snuggle session felt pretty sweet.
And I couldn't help but thinking, "Oh my word, this girl is four, she is FOUR, she is four." How could four years have already passed mothering this little turkey? I had to make myself remember her tiny little baby self, tucked up in the NICU, hooked up to her apnea monitor, getting milk through her NG tube, and even getting handed to a kind nurse decked out in scrubs for her little body to be opened up and her heart be made whole.
All this time has passed between those moments. My baby has become my little girl. My silly, creative, curious, lovely, and sometimes infuriating little girl. It's a trip, this parenting thing.
It changes oh so fast. The moments when you feel stuck and overwhelmed, the moments when you feel blissfully at peace, all of them keep flying by.
These days life feels pretty different than I may have thought it would four years ago. Our days are filled with song and dance, imaginative play, art projects that barely seem worth it they're over so fast, endless cleaning and constant errands. They're filled with the most incredible little preschool and a very funny baby sister.
They're filled with a strong-willed little girl who likes to show us who's really the boss.
They're filled with play-dates with new friends, and watching my shy little girl keep mostly to herself and then talk and laugh about how much fun she had after her friend goes home. They're full of conversations with other parents that aren't always about Down syndrome, and these days often with parents whose own children don't have disabilities.
They're full of way too little sleep for me, a to-do list that never ends, and a feeling of always being stretched too thin and needed too much. They're full of never-ending runny noses from school, and long rainy days. They're full of missing my own friends and always telling myself how I need to prioritize my self and my adult relationships, too.
And they're full of laughter and games of peekaboo (or "kaboo!" as Cora likes to say), and hiding under the blankets in the guest room. Skype dates with family, and long walks in the stroller.
They're full of life. It's not really what I had pictured it to be. It's pretty ordinary, largely exhausting, and overall a beautiful blessing.
My life with my awesome big four year old girl, and her sweet little sister.
