Love and Loss

Love and loss

I see your magic Haley. Even when it's buried and hard to find. I see.
I see your magic Haley. Even when it’s buried and hard to find. I see.

When we talk about love and loss of a loved one we often think only of death.
What I, and many families like ours, endure is a different loss altogether. It’s the loss of the one you love even though they’re sitting on your lap. It’s day in and day out living with, loving fiercely, someone that you know is a shell of themselves.

Sleeping away a beautiful summer afternoon stolen by seizures yet again. A beautiful shell with a beautiful spirit hiding inside.
Sleeping away a beautiful summer afternoon stolen by seizures yet again. A beautiful shell with a beautiful spirit hiding inside.

There are variations of this in so many households. People who are shells because of depression or self loathing or addiction or in our case a combination of seizures and legal FDA approved drugs.

Haley is a sweet, funny, loving girl. She’s the first one to comfort a friend who is hurt or sad. I marvel at her resilience and strength both physical (not even leaving the classroom after a seizure but carrying on through the fog) and emotional (battling the constant balance between carefree childhood and maintaining safety). But Haley is not really Haley. Not quite the same vibrant, mischievous girl she was as a toddler. Occasionally I get a glimpse of clarity and sparkle in her eyes and it literally takes my breath away this girl she could be. The vast potential I see. Full of possibility and hope not realized.

Haley stopping to smell the flowers before I could appreciate how important those moments are. We had so little time together before the seizures and drugs invaded.
Haley stopping to smell the flowers before I could appreciate how important those moments are. We had so little time together before the seizures and drugs invaded.

And so it’s a different kind of loss. To hold your spirited child in your lap and be grieving who they could be all while loving who they are.

And that’s my goal as we proceed on this cannabis journey. To meet Haley. To help her find her inner sparkle, to hold her hand as she fights through the fog that is as much from the pharmaceuticals as the seizures.

There is a difference between expectation and hope. As we embark on a new, uncharted, path I have no expectations. None. But I cling to hope. White knuckled and desperate I cling.

And I said in my post about siblings that I see Emily. I see her struggle and her achievements, but above all I really SEE her.

Haley and Emily "before". Before seizures. Before seeing them didn't seem so hard. When it just came effortlessly.
Haley and Emily “before”. Before seizures. Before seeing them didn’t seem so hard. When it just came effortlessly.

I want Haley to know that I see her too. Glimpses of her fire and tenacity but also her wit and nurturing instinct. I will always look past the haze, past the fixed but unfocused gaze and into her heart where it matters. Where her spirit shines through despite the challenges and obstacles that seem intent on destroying it. I know you’re in there Haley. I see you too. And I will work feverishly to find more than glimpses.

Because it all comes down to love and loss. And I love you too much to lose you. I love you enough to find you.

4 thoughts on “Love and Loss”

  1. Totally get it Jill. After Missing Michael was published several people who did not know our situation fully thought he had died. I’m hopeful you will find your Haley.

    Liked by 1 person

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