I've cried every day this week.
At the end of a long run when thoughts of shakey-handed baptism and quick 'salt of the earth' sermons flood my mind for the very first time in almost 3 months.
And then my mind spins because it hasn't even been 3 months and yet, my God, it feels like an eternity.
"Salt enhances everything," he said, "and she did that to our lives. Mabel enhanced everything and made it better."
A beautiful butterfly, wings spread wide as I tilt my head just enough to take notice of it's delicacy. My knees wobble and shake until they hit the gravel beneath me. I am all alone at the end of our driveway at the end of a walk that she would have adored; birds singing and trucks blowing by me. She would have tapped as music played and I would have sang out beneath me to the longest legged girl in town; toes painted like upcoming fall.
The moment when a new photo book comes in the mail (they come routinely) and this time, there are no photos from when she was alive in it. Only memories that I'm lucky enough to still be able to share. But it's a punch to the gut. Shes finally been gone long enough where she doesn't actively exist on the pages anymore. It's vulgar in my mouth and my stomach feels like it's rotting away.
I sat at the cemetery on her bench and I wept until my body ached more than it's already aching. I hunched and wailed over a bench that will soon be taken to have her name and photo etched on it's front. Permanently.
4 years and 10 months here. Forever elsewhere.
It's funeral bill moments.
Tucked away tightly; it's details never meant to be looked at or seen. Until they are.
And then retching alone in a dirty bathroom, heaving dry the nothing that remains.
It's beautiful celebratory moments like friends having new, healthy babies; lucky to be alive. School starting with kids who are 'resilient' and 'can bounce back easy,' as if 'bouncing back' from your sister's death should just come to you naturally. As if the memories that were made don't eat you up with stomach turning and heart racing.
And then it is those moments. Walking to school only to get there with a gut that is twisted and tears starting. Sitting and praying together in front of the drop off line, a spectacle for the supportive but also the nosey. The confliction isn't lost on any of us; these children and I. Even they feel those things. But then a God of perfect timing brings a friend and inside her car we jump, drive safely home where we belong; together, she and I. She doesn't want to go in sister's room. "It's too hard for me now that she's dead." Tears falling.
It's the first time I've heard her say the word out loud and it stings me deep.
We end up there anyway, draped across the couch where she was draped across me as she took her last breath. Big sister feels guilt and sadness that runs so deep. Mama feels helplessness in her own grief, sadness, despair. The burden is so heavy, I tell her, let's not carry it ourselves.
We cry and pray and wait for mercy.
He always shows it.
A friend who lost her beautiful daughter texted me this week with amazing news.
She then went on to say "No one tells you how gone, gone really is, do they?"
And they don't. Or if they do, you can't comprehend it.
This same friend blogged beautifully recently about her daughter and their surviving children,
"She is more than a sad little ghost caught in a single picture frame. She is more than a historical event. She is more than hazy, half-glimpsed visions of red curls and pill bottles, ivory skin and wasted youth.
None of us had the privilege of really knowing her as she grew, but we tell them what we can. Who knows what might sift through and lodge in the scaffolding of their brains, but they are not too young to understand the currency of memories, how they keep you company. They learned early on about the clenching muscle of the heart, the way it wants to grasp the ungraspable, preserve the ephemeral..."
This week I have felt the pain of a thousand pained people.
I look at their faces, all of them and as usual, I am grieving hard for the ones I love. And also for myself. In two days she will have been gone three months.
And that is no time at all.
Yet it is everything.
Just like her life here with us, actually.
No time at all, but everything.
All that we have done all summer and all that we must go on and do is overwhelming my spirit and theirs. They can't fathom that we would have to wait our entire lives to see her again. I hear it and my heart literally bleeds purple, fast. I feel it rushing.
But all in a moment I feel the sweet peace of what they have just said and let it rush over me.
They know they'll see her again. They have hope.
They trust in Him.
I have concluded that I will very likely weep with an indescribable ache every day for the rest of my existence. But after my brother held me in his arms this afternoon he said something so simple and yet profound, "Well, sis, I don't think there's much else we can do about it."
And then I wanted to cry for him, her uncle, too.
The pain is so great.
But he's so right.
Time marches on without her. The days pass and the world around us forgets a little more each day. I'm determined to feel it all, as always and allow the people around me to do the same.
She was ours to love. She is ours to grieve after all.
She was ours to love. She is ours to grieve after all.
"Blessed are you who are hungry now, for you shall be satisfied. Blessed are you who weep now, for you shall laugh."
To my little love who is now free from disease; who can now see with clear vision, eat without hindrance, lay without jerking, sleep without medicine, be without pain...
I am so happy for you; so sad for us.
I love you with an incomparable, unfailing love.
For more information on batten disease, please visit www.bdsra.org
You are always welcome to donate to research through the bdsra in memory of Mabel.
Please, also, feel free to follow our journey more closely (frequently) on instagram: rameelin
Thank you for your ongoing love and support.