navigating the seasons: what was and will never be again
Yesterday was the epitome of a perfect fall day. And, it was one of those days with too many gaps. Too many gaps to pause and think. Too many brokenhearted selahs.
The last three years of my life have been spent in another world that is so familiar to some, but so foreign to others. You don’t understand it unless you’ve been in it.
I’m startled to realize that I miss that world. I miss her nurses, doctors and therapists. I miss that community. Because even though we were often in isolation, there were familiar faces and routines and everyone had a role and a place in our life. Now, I have to relearn the art of mothering, without the help of so many others. It’s funny because I kind of resented all that help.
I miss the fight. The fight against SMA. I miss saying: SMA didn’t win this time! My girl is a fighter! We are going home!
Sometimes, when my guard is down, I feel like a failure. I read the posts from so many amazing families out there, and I feel lonely.
My child is no longer fighting. She fought so hard. Too hard. We lost.
What do I say now?
I turn 30 in eight days. And I have two children. One of them died.
She died from a disease that parents try to fight in so many different ways. But our little girl was tired. Her eyes told us in the gentlest way, that she was content to be tired.
And, shortly after these heartbreaking revelations, her disease reared it’s ugly head once again, and, the reality is, it consumed her.
These quiet moments give me time to think. And they terrify me. They remind me of what is missing.
We moved in January, to a quiet suburb. It was a good decision for the season we were in, but…now I yearn for our old life and home.
I miss walking out our front door onto the street. I miss people watching from the window. I never felt lonely there, even when we spent so much time indoors. I miss the way it felt to have infant Teddy strapped to my chest, with Florence in front of us as I huffed and puffed up the hill by our house. I miss the neighbourhoods and parks and shops that I know so well. I miss looking out the steamy kitchen window as I attempted to make dinner. I miss hearing and watching people outside our door. I miss watching the seasons come and go from the living room, with Florence tucked safely inside. I miss the way the heater filled our home with white noise. And clunking.
Our old home is where Florence spent most of her life. It’s where Theodore was born. I still can’t drive by it. We are waiting for permits to tear it down. One day, we will return to that plot of land to rebuild.
We own that land and all those memories. They linger, in between the flaming maple trees, the clouds of cherry blossoms, and the crooked pavement. I’m not ready to be there without her.
Autumn makes me slow down. I pull out the crockpot. I have more than one cup of coffee. I sit and watch the blue sky and orange trees. And as much as it hurts, I have to pause and reflect on what was and will never be on this earth again.
My Florence, in the fall. Two of the most beautiful seasons ever created.
How many more autumns, winters, springs and summers must pass before your season starts again, my love?
Oh, how I wish the season of Florence lasted forever on this earth.
This is our first time experiencing a true change in the seasons, since she passed away. She died on the cusp of summer. With this dramatic change in weather, I feel her loss deep within me. The seasons change. Fall will come and fall will go. Summer will return. Life rolls forward, and I roll with it. But her season has ended. Can you believe it? I ask myself this on a daily basis.
It’s true. We will never see Florence again. Yes, in heaven. Yes, we have that hope. But we will never see our daughter again. She is gone.
This rattles me, because I’m only now learning to say it out loud. Our shock and numbness has rubbed off. I blurt out the truth when I meet new people. Hello. My daughter died.
I am comforted by this song below. Music has a way of inviting me in to a sacred space and filling all the gaps. I listen to this song a lot lately. I like to imagine that day when I will see her again. I picture her walking right into my arms.
“Hello. I’ve been waiting for you. I didn’t know if you’d recognize my voice. Because I’ve been whispering your name, again and again. I’ve been imagining this day. And I’ll never be the same.
I’ve missed you so.
Without you here it’s not the same. I’ve been waiting here…
Welcome home. It’s so good to see your face.” (lyrics by Joy Williams: Welcome Home).