embracing the broken Christmas

December 8, 2015, Michaela Evanow, 11 Comments

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.

Of course.

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.

Everywhere.

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.”

S. Mclachlan 

11 Comments

  • Reply Diana Trautwein January 5, 2016 at 7:23 PM

    I’ve been saving some posts to read in the quiet of this new year and this is one. Thank you for it, dear Michaela. These words are hard-won, wrung from your very bones, and I am grateful for each one of them. You are doing the hard and beautiful work of grieving – as you have been since her diagnosis. And you are modeling for all of us how to walk through truly terrible things with grace, honesty and wisdom. I hope your Christmas held moments of deep joy as well as sadness, that you found plenty to celebrate as well as to mourn and that every Christmas you are given will be a beautiful, tangled swirl of all that you have lived and learned.

    • Reply Michaela Evanow January 8, 2016 at 12:26 PM

      “hard-won, wrung from your very bones” I love that, Diana. You are always such a source of encouragement to me. I hope you know that.

  • Reply Diana Trautwein December 11, 2015 at 7:56 PM

    Omigosh, Michaela. TEARS – of both sadness and gratitude. Thank you for your loveliness and your candor and your amazing heart. And I thank Florence for that last piece. Oh, yes, I do. What a privilege to read this.

  • Reply Amanda December 9, 2015 at 3:31 PM

    I cry. I understand. Thank you for holding the sacred space. I join with you from the other side of the world, partaking in your pain and simultaneously rejoicing that one day these moments will turn to a joyous reunion.

    • Reply Michaela Evanow January 8, 2016 at 12:27 PM

      Thank you, Amanda.

  • Reply Stacy December 9, 2015 at 2:24 PM

    All of the tears, all of the heartache, all of the grief…thank you for sharing it. Thank you for speaking truth. I have only lost babies before I met them. Five of them, before they had a chance to even take a breath. That was heart-breaking, but your mama grief is a whole new level. It is good for me to read this, to see this, to feel it with you through your words. It teaches the world that it is okay to grieve a lost loved one. It is okay to come beside a friend going through this and simply say “I’m here.” I am learning so much through your raw honesty. Thank you. Thank you for sharing this.

  • Reply Sue Keida December 9, 2015 at 1:18 PM

    Dearest Michaela,
    I remember my religious education growing up and one thing (well there were more things haha) that really bothered me was instead of acknowledging our suffering we were to “remember the sufferings of Christ” and stop thinking of our own.
    When I look back on that I am not surprised that I was discouraged from FEELING MY FEELINGS and that is just plain wrong.
    I have long since abandoned that notion and embrace all that my heart and soul put forth. It frees me and I like being free.
    I’ve been thinking of you and so happy you wrote. Keep up embracing your feelings and keep writing!
    xoxo
    Sue

  • Reply Lorraine December 9, 2015 at 9:52 AM

    Thank you for sharing your heart. The experience of Florence’s living and ultimately flying to God’s lap, impacts those of us that have seen our child/ren suffer. Thanks for sharing the thorns on your Christian ‘bed of roses’. May God grant you peace and comfort during this season of celebrating His birth as we somewhat understand what it meant for Him to suffer during His life here on earth. I am blessed and encouraged today because of your willingness to share. Thank you Jesus for Michaela!

  • Reply Danielle December 9, 2015 at 9:05 AM

    Beautifully written Michaela ❤️ Love that song too 😢

  • Reply melly December 9, 2015 at 4:33 AM

    sitting here with tears streaming down my face. “she lit up the sky and broke us into a million, tiny pieces”
    so perfectly put. he lit up my world and broke my heart in more ways than than I could imagine. I’ve never really met someone who knew what my life was like. thank you for sharing your story, your grief, your love.
    merry christmas.

  • Reply Sarah Turnbull December 8, 2015 at 4:27 PM

    Wow, just wow!! Many prayers for you all!!
    Sarah, Mom to Stella (Type I SMA)

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