embracing the broken Christmas
As a grieving mother, entering in the Christmas spirit can be very difficult.
I’ve felt such a desire too, however, and I’ve been thinking about it a lot.
How am I filled with wonder and delight? How am I decorating a Christmas tree, buying our first ever tinsel garland and first ever big, real fir tree and our first ever matching stockings?
How is this all happening, while we mourn the loss of our three year old?
If I’m honest with myself, it’s because Christmas has always been a heartbreaking time for us, since she was diagnosed with SMA a few months before her first Christmas.
I am not one to push emotion aside. Since the day of her diagnosis, I have been mourning. I chose to see the light and love and strength inside of her, but the reality is, the disease is and was ruthless and her body suffered.
I couldn’t wrap my mind around losing her, around facing the fact that Spinal Muscular Atrophy would slowly steal her ability to live. It just didn’t feel real.
But oh, it is so real now.
Christmas meant cold and flu season and massive amounts of fear and trembling for me.
She didn’t like crowds or loud noises, so we never went to Christmas parties with her, or had too many people over. We didn’t like to do things apart from her, so going to get a Christmas tree just felt…difficult to do. If only one of us went, it felt wrong. If just my husband and I went without her, I felt devastated. So we didn’t participate in a lot of normal Christmas activities.
I was exhausted all those years. Physically and mentally drained by the grief. I functioned, I certainly lived and loved my life, but I was in a fog.
I need love and tenderness and help now, but I needed it even more then.
I am not ashamed of that. Sometimes parents that care for medically fragile children feel they have to put on a front of strength. They get called superheroes, but their day to day lives are much less glamorous.
We didn’t share a lot of detail of her car, because it was too hard and I didn’t want to talk about it much, but there was nothing I wanted more than for Florence to be free to run, eat, speak and sit up. I ached for normal.
These types of parents are strong, out of necessity. But it doesn’t mean they don’t carry the ache and feel burnt out and deeply exhausted.
And their hearts, the hearts that are constantly filled with love for their children, also fill up with grief. Sometimes unspoken, unacknowledged, but there, nonetheless.
My heart has been broken for years now. It broke the day the doctor said her muscles didn’t work. It broke again when she first choked, broke her bones, couldn’t urinate properly, needed splints, needed glasses to help her wandering eyes, needed BiPaP, needed in home nursing, needed a suction machine, needed a feeding tube, needed a special mattress to prevent bedsores, needed an oximeter, needed the occasional catheter, needed morphine, needed hospice care, needed to be free.
It just broke! Again and again.
So, Christmas is here, and I have given myself permission to be broken again this year.
I like my broken Christmases. They bring me closer to the earth, grounded by my inability to function at 100%.
In tune with those that suffer, in tune with those that grieve.
I lay no expectations on myself. I set up boundaries and say no often. If I want to run away, I do. If I don’t’ want to partake, I don’t.
Florence gave me new perspective. She taught me to slow. And in the thin places, she showed me how to flourish.
When people tell me Florence was so lucky to have me as her mama, I am grateful. But I know, I was given the greatest gift. The gift that revealed to me what love smells, tastes and feels like. She loved selflessly. She loved without holding back. She loved hard, even as her muscles stayed soft. She loved wildly, even as she faced pain and increasing loss of mobility.
And she suffered. My daughter suffered and died.
It has taken me a long time to say that and acknowledge it, because what mama wants to put those words to her lips?
I say them, and I tremble.
My storybook ending did not come.
But she did.
She did come. Into a world full of heartache. She lit up the sky and broke us into a million, tiny pieces.
And much like the Jesus we celebrate in this season, she showed us how beautiful those sparkling shards can be.
One here, one there, clinging to us like gold flecks. Showing up in the dark. Showing up after the rain. Showing up in the grime. Showing up in unexpected places and on the bottom of our shoes.
She couldn’t partake in a lot of activities. But I can.
So, I choose to break bread and listen to stories and hold the sacred space and decorate the tree.
I don’t do it because I’m strong or feel like I need to. I don’t always do it with a smile. In fact, I nearly threw the whole Christmas tree across the room in a fit of rage while stringing lights and then proceeded to spend the next hour in bed crying and screaming.
I do it because I want to feel. I want to feel my grief, feel her near me, feel the wild.
She showed up. And because of that, I choose to show up too.
To sit in the silent night of heartache and feel.
“This is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by
Oh I miss you now, my love
Merry Christmas, Merry Christmas
Merry Christmas, my love.”