“Grief with a disabled child is a tricky topic.
I want to tell you I’m going to get it wrong. I might get it right sometimes, too.
But what I do know, is my feelings are valid and so are yours.
You can’t tell me I’m not allowed to grieve some parts or aspects of his life. The parts which bring me to my knees in tears – watching what his little body has to endure.
Come to the ER with us and watch 6 nurses hold him down while trying to place an IV – then tell me how to feel.
Hold my hand while he’s seizing and we’re watching his face turn blue while the seconds tick by, waiting for the paramedics – then tell me how to feel.
Grab a towel with me to catch the vomit while holding his lethargic body up, worrying he might aspirate and end up with pneumonia – then tell me how to feel.
Sit at his bedside and impatiently wait 8 hours for him to wake up after intubation due to status epilepticus – then tell me how to feel.
I’m not grieving WHO he is. I love him unconditionally and celebrate who he is every single day. He’s mischievous and silly. He’s smart and very interested in learning about animals.
He loves his family, lounging in the pool, and man, does he love books! He’s rigid in his routine and doesn’t like to be wrong. He loves music and has yet to tell me what his favorite song is, loving the game of telling me ‘no’ over and over.
My feelings surrounding everything he has to endure are valid. There’s a lot of hard moments when parenting a medically complex and disabled child. And while I share a lot of our lives on here, these are mine. Our life, our story, my feelings.
Feelings may not be fact, but they are my truth.”
This story was submitted to Love What Matters by Melissa Schlemmer of Forest Lake, Minnesota. You can follow their journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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