BY GUEST BLOGGER, BRITTANY GUMMERE

I’m trying to find the words. I fear the words I find will be too much like any thoughts I share as of late: ho hum, dum drum, down-in-the-dumps kind of thoughts. I fear that my words will speed any developing compassion fatigue that our loved ones may have. My husband and I are five years into a journey with our daughter that is getting no easier, and is in many ways getting harder…with no end in sight. How many times can someone ask how I am, or how our daughter is, only to receive my ho hum response? How many times until they stop asking?

I wouldn’t blame them one bit. My own compassion is fatigued, and she is literally my world.

Lately, I’ve been struggling with all that 2019 and our daughter’s Phelan-McDermid Syndrome and 7q Duplication have stolen from her. The biggest loss: her joi de vivre.

Our daughter was sunshine personified. She was energetic and affectionate and goofy and determined and clever and cheerful. She was quick to smile, easy going, and she never met a stranger. She was everywhere and into everything. She was “talkative” and would often sing songs to herself in the mirror and loved interacting with others.

But life doesn’t discriminate, and it chose our daughter to receive a year of debilitating, horrible bladder spasms, an epilepsy diagnosis, significant bowel issues, multiple painful procedures, and regression in every area of her development. And so, the daughter we knew and loved faded away.

There’s no singing, no playing with toys, no mischief, no giggles, no joi de vivre.

Today, we walked around the mall and held our daughter’s hand as she quietly walked, barely taking in the world around her. I met my husband’s eyes, and all I could muster up was, “Someone is so solemn today.”

Solemn. Withdrawn. Pensive. Quiet. So quiet.

We went home, and as I try every single time we’re together, I took her up to her meticulously designed play area and tried to play. She just cried and cried, and curled up and went to sleep after lying quietly for a good twenty minutes, despite my attempts to have her play with me.

This was a form of grief I wasn’t prepared to experience. How do you grieve someone who is so very much alive? The despair and helplessness of standing by while painful procedures are happening is one thing, but to watch as your child becomes a shadow of themselves with little to no hope they’ll return? Devastation. I hold her every night as she falls asleep and thank the universe with each rock of the chair she’s still here, still breathing, still ours. But it is still devastating.

And so that’s it - that’s where we are. Balancing devastation and grief and acceptance and gratefulness and love. Trying to hold onto the fact that though our little light is flickering and dimming, she still shines. When she first sees us when we pick her up from school, or when she watches Puffin Rock or hears anything from the Moana soundtrack. How she claps when we come to get her sleepy head in the morning. She even shines in her quiet moments, in her solemn and watchful face. I know, I know, I know. I know she still shines despite it all. But I miss my girl.

We continue to try to make our own joi de vivre, and perhaps if she’s saturated in it, the daughter we know and love will come bursting through again. But if not, we will adjust and pull ourselves up by the boot strings and continue to give her all we’ve got: all the joy and love and strength and goofiness and tenacity we can and keep moving ever forward together.