Winter is nearing end.
Physically and emotionally.
Winter is hard.
It's within these months where I hold my breath, somewhere inside waiting for Mabel to slip from here to Heaven. Winter is a silent lurker in the heart that is typically strong. It brings about doubt, questions, sickness, cold. It's gray days etch within me a glimpse of what they may inevitably and indefinitely feel like when she's not here for me to hold, smell and care for. Winter is the brief glimpse of impending coldness and longing in my soul.
But winter did not steal my girl from me this year. Oh no.
The sunshine showed up and sang his victory song just a few days ago. He shined brightly into her thin, auburn hair and touched the tips with refreshing.
Her eyes met mine and for a second it as was if she saw me. Through to the depth and entirety of me. She does, I'm certain. It had been days since she had really responded to much with a smile but in this moment, her little nose crinkled like mine does and her lips spread thin across freckled cheeks. Her tongue, always emerging, didn't fail. My eyes filled with wet and I reached down to brush her eyebrow with the tip of my finger. 'So perfect,' I thought.
'Not made for this world,' I thought.
Two nights before as I carried her limp, tired, 18 pound body to her bed, I felt the weight of her and the weight of the week consume me. I laid her down and laid beside her. It had been an exceptionally scary and non-typical day. Her body was limp; her color, gray like winter. She had nothing- her body was ragged and non responsive to sound, or movement. Earlier as she lay in my arms I remember wondering if this was it; if this would be the night that led to the morning when she wouldn't wake. Was her brain tired and finally shutting down? Was the energy her body needs to simply breathe going to escape her as she slept? Would this be the last goodnight I whispered?
I wept beside her as she slept, something I haven't ever done before. I rubbed her hand as it fastened around mine and I watched her little limbs jerk to and fro under the weight of her blanket, as they always do; involuntarily, thanks to this wretched disease. I listened to her breathing, slow and steady. I smelled the crease of her neck, deep and deeper. I looked closely at her ears, the way they curve; how one opens at the top and how one does not. I pushed the sweaty curl of her hair behind that perfectly imperfect ear and lay helpless to what the night may bring for my babe.
Night is like winter, you see.
Dark, cold, lonely, secretive.
I spoke it out loud to only one.
"Something is different. Things are changing. I am terrified. This is so hard."
A couple of weeks ago a batten family that I met at our conference last year lost their sweet daughter unexpectedly. She was in rather good health, considering. Her mom essentially went to lay down her keys on the counter and when she returned to kiss her daughter, she was no longer breathing.
Just like that.
In one single instant.
The bridge between life and death, nearly invisible.
My heart shatters time and time again, day after day. The sadness, strain and stress of this disease and all that is to come is remarkably overwhelming. To sustain life outside of batten disease is a challenge because if I let it, it could easily be all consuming.
Her care, the worry, the constant changes, our emotions.
It's undeniably the hardest road that anyone should ever have to walk:
Living with a child that you know is going to die. Waiting for the signs that could show you that the time is near. Realizing that there may not be any signs at all; that she could be gone in a single instant with no real warning. Looking at the changes in her eyes, body, and abilities and questioning what they mean. The ups and the downs from one minute to the next; one day to another.
This life is one that very few know. None should have to.
Winter often feels a bit like a thief to me; stealing the sunshine and a bit of my joy.
But then, as always and as promised, Spring.
Fresh, open, beautiful, miraculous, refreshing, opportunistic, peace bringing spring.
When I woke to morning, after the night that I questioned would be her last, two blue birds landed on the back patio of our new home. The evening before I had watched the sun set over the hill and breathed deep the promise of a new day. I no longer pray in such a manner, though, rather I pray for the God of life to give and take away as He will. I pray that when the 'taketh away' occurs we will feel peace and that the literal breath of Heaven would be the wind on our cheeks as we walk through our days without our girl. Until then, I rejoice with morning.
With blue birds and sunrise. With coffee and gasping breath from the lungs of my almost-5 year old. I rejoice with tube feedings and jerking movements, or sleep in the middle of the day where sleep didn't used to be. I rejoice with the buds of yellow roses outside of my back door. I rejoice with wonder, question, sorrow, uncertainty, but also with joy, promise, life, and hope.
Things are changing in my girl inside just as the dance of the days outside.
I can feel it in my spirit just as certainly as I feel the spring air settling in.
There are tangible, noticeable differences but mostly her spirit and mine are speaking.
Thank you once again for the lessons you have taught me. For the longer days, and the deeper thoughts. For the internal twists and turns that were necessary for my own growth and strength. I am positive it will serve me well in the days to come.
For now, I welcome spring with slight uneasiness, never knowing what our days hold. But whatever it may be, I am grateful. To be her mother, to walk out this life with peace that truly goes beyond describing or understanding. To always and forever know the joy of a God who created it all and made it oh so good.
“It was such a spring day as breathes into a man an ineffable yearning, a painful sweetness, a longing that makes him stand motionless, looking at the leaves or grass, and fling out his arms to embrace he knows not what.” -John Galsworthy