Just when I thought you packed up and left,
When I finally felt free…
There you appear at my front door,
I should’ve known it was you.
Your gentle knock of secret, unexpected tears.
My lagging appetite.
What triggered your return?
I’m guessing the random prom picture I saw on my timeline.
Two teens: one in a bright, electric blue dress with dainty sequins. The other wore a beige corsage. A radiant garden in the background permeated the photo.
Both wore gentle smiles of expected excitement, with an effervescent euphoria.
All that was missing was my daughter. She wasn’t in the picture or any high school dance/prom pictures.
The world and most people see death as the primary allowance for you, grief, and rightly so.
Losing a loved one is a series of emotions that sometimes never fully go away.
But grief, you funny creature, are secretive.
You crept to my front door cloaked in reality.
You, grief, are a product of parenting a “differently-abled” teen.
Labeled “multi-handicapped” by educators, “special needs or non-verbal” by some parents, or simply “complex” by medical professionals, a diagnosis of Down syndrome and “on the spectrum” says that my daughter doesn’t fit the mold.
Grief, you care nothing about the fierce love I feel for my daughter or the special place in my heart she will always have.
You selfishly enter my life and remind me of the things that may not or never will be.
My daughter’s driver’s license.
Her first car.
Her first home.
My first date worries.
Our first real conversation.
Grief, most people expect you to show up when birthing a child with complex needs. There are books, resources, hugs and groups to help parents cope.
But Grief, you never told me you were truly an ocean.
You often stay calm and at bay, but your tumultuous waves may unexpectedly hit at any moment.
The actuality of words like “conservatorship,” “respite care” and “assisted living” hit like a tsunami.
So, Grief, what will I do with you and this massive ocean you have brought my way?
I shall greet you at the door, but you will never stay.
Like any bad relationship, I’ll get over you.
I’ll talk to my tribe and they will cry with me.
I’ll focus on the beautiful and reexamine my definition of “progress” and normalcy.
I’ll fight your side-kick of “comparison,” and focus on the “here and now.”
I’ll fight you with continual recognition of baby-steps, like a made bed, or the next unexpected sentence.
I’ll look through my rose-colored glasses and see how my family is complete and whole at this very moment.
Our laughter, hugs, kitchen dance parties, and my daughter’s favorite: road trips. They shall be my focus.
As you leave, Grief, know that your chances of returning grow slim.
Today I’ll slam the door in your face, even as I melt to tears braced against that door.
As I continue to focus on her smile, her laughter, her beauty — I know my tears will eventually cease.
Grief, you may be an ocean, but my daughter, well…
She’s bigger than the sun.
She and my family are the light that will guide me back to delight and contentment.
From left to right: Keli, Tayler (16), Lewis (Keli's husband), and Ella (4).
Keli Gooch is an author, blogger, and licensed mental health therapist. On her blog keligooch.com, she shares stories from her personal notebook as a mother of a daughter with a dual diagnosis of autism and Down syndrome. She is passionate about parenting and the mental health field.