It's March of 2020, and I am in my daughter's hospital room, or we call it the hotel with robots. Those darn machines beep every time my daughter has to catch her breath due to a seizure or game her body likes to play with the nurses.
My nearly two year old daughter has a terminal condition , Tay-Sachs disease. It’s killing her brain cells day by day. And I have a front row seat to it all. Coming to grips with that and knowing that her days are quite literally numbered is something I cannot comprehend.
We’ve made a makeshift bed out of the hospital click-clack futon sofa. A thick padded cot mattress lays on top of the futon with white hospital sheets that don’t fit and my blue tie dye fleece tie blanket on top. There I sit propped up on the bed, staring out the hospital window.
It’s a warm March afternoon and the sun is starting to cast shadows on the tall buildings around. The barren trees outside the hospital walls look sad as the snow melts and the people walk down the sidewalk to the parking garage.
My phone is playing the song “The Goodness of God” and the tears start to drip down my face. They are warm and salty as one hits my lips. I fight back the whimpers and sniffles as this is all too much to take in. And I don’t want to embarrass myself in front of any nurse or doctor that stops by. Rotations are about due and today, I believe, handoff to the next nurse starts at 4pm.
The song lyrics play:
And all my life You have been faithful
And all my life You have been so, so good
With every breath that I am able
Oh, I will sing of the goodness of God
And I cannot believe them. You know the expression “fake it till you make it”? Well mine is “faith it till you make it”. The lyrics tell me my God is faithful. But my sleeping (dying) child in the crib next to me says otherwise.
The lyrics tell me that all my life my God has been so so good. But I remember being 19 years old, and in that hospital bed, being told I had ovarian cancer and would not have babies of my own. That being a mother (my dream) would look very different.
The lyrics tell me that with every breath I am able I am to sing the goodness of God. As the tears now flow freely down my face, and the sniffles turn into clenching cheekbones, I try every attempt to mutter those song lyrics. In my heart I am broken, but in my faith he is carrying me and my baby. He is giving us strength and courage to face each day, hour, minute, and second of this journey no child or parent should ever have to live out.
The bridge starts to play:
Cause Your goodness is running after
It's running after me
Your goodness is running after
It's running after me
With my life laid down
I'm surrendered now
I give You everything
'Cause Your goodness is running after
It's running after me (oh-oh)
I remember that moment of surrender in that hospital room. As I sobbed quietly on that bed, "God your will be done here" I say to him. "I cannot do this alone and I give you everything. Olly was yours first and she is yours now. I give you everything I have. I know she may not be healed in this side of heaven, but God I ask that you make it peaceful."
Her name (Olly Belle) means peaceful beauty. I wanted nothing more than for her to pass in a quiet, gentle, painless way in her loving family’s arms as she drifted off to heaven. I know he would answer that prayer, I didn't know it would be a short two weeks later.
I had also in that moment had given surrender to the way I thought my little family should look- a mom, dad, and two beautiful healthy little girls. Instead we would soon be a bereaved mom, dad, and big sister with an angel in heaven. That picture was not complete to me. And I prayed and held God to a promise that his goodness would keep running after me, follow me through this dark tunnel of grief my family and I were being asked to endure.
The song ends as I wipe my tears from my face. I take a deep breath and notice the sun has set even further and the hospital room is becoming more dark. It’s time to take a few more deep breaths, and begin again.
Time to turn those rainbow lights Olly loves back on. Peaking at the crib her eyes are open and sweetly staring at me. She can no longer coo or giggle, but her eyes tell me everything I need to know. She is comfortable, she is snuggly warm, and she is a child of God. She knows her momma is a fighter and will protect her with every fiber of her being.
In that moment, we are protected. We are safe. We are loved beyond measure by a God who is going to see us both through this. We are forever his and he is forever ours.
So with my hand holding her tiny hand, and with every breath that we were able that afternoon, we sang of the goodness of God. Me with my voice and her with those doting beautiful brown eyes.
