Setting a fly free, musings about special needs parenting from author Gillian Marchenko
When special needs parents struggles, sometimes all they can do is hold on. Because their children are worth it.
I sit here on Wednesday morning, second cup of coffee in hand, greasy hair, same yoga pants from yesterday, Polly and Evangeline (who both have Down syndrome) watch Angelina Ballerina for the umpteenth time in their young lives.
In the past two days, my mood has dipped.
The previous few weeks have been busy. Now I have less energy. Less interest in things around me. More anxiety. Less focus.
Not great timing, as I have several looming work deadlines, and a presentation to finish preparing for a Joni and Friends seminar I will participate in on Saturday about special needs families embracing the journey.
Problem is, this week I am not embracing much, let alone the journey of parenting kids with special needs.
Evangeline had a difficult day yesterday. She cried often, sprawled out on the floor, bumped her chin against the floor, refused to eat, and was generally grumpy all day.
I really wanted to help her. I bathed her, checked her temp, rocked her, fed her a couple favorite snacks. We went for a long walk outside (usually one of her favorite things) and still, she was unhappy.
Evangeline is non-verbal. She knows three signs: more, sing, and school.
She couldn’t tell me what was bothering her. And my mommy intuition was blocked.
There was no way I could reach her. I could not help.
And that disappoints me.
Defeated and deflated this morning, I am unsure I am the right mom for the task God put before me: to parent my four wonderful girls; to know their needs and address them, to help them reach their God-given potential, to love them, and love them well.
Am I the right mom for the job?
I open the window directly behind the couch in the living room, and locate a fly buzzing around in between my smudgy, hand-printed window and the netted screen. He sees the outdoors, can feel the breeze, but just can’t seem to make it to freedom.
Life slows. The kids enjoy their show. I sip coffee, pull up the window more, and open up the screen behind it.
“Come on little fly, freedom from your buzzing struggle is right there. Fly, and break free from the mishap of the cage you unknowingly got yourself into.”
After a few moments, the fly finds the opening and darts out into the blue skied, crisp fall day.
My gaze falls on my children.
They both smile as Angelina Ballerina twirls across the dance floor on T.V.
I struggle as a special needs mom.
Sometimes all I can do is hold on to my children. Because in their embrace my mind carves out just enough space for perspective.
I force my attention on the fly.
He has a lesson for me.
How many traps do I set for myself. How many actions and attitudes trip up my greater goals in parenting. How many of these “traps” are really opportunities as a mom to let myself off the hook?
How many mundane, daily mom things bring me down to the point where I felt like a fly trapped between the window and the screen?
I’m not going to do everything right for my kids. In fact, I will do more wrong than right, for sure.
But by setting a fly free, this special needs mom attempts to let herself off the hook today.
I want to do better. I will set measurable goals. I will hug my children and affirm their worth and the worth of the ups and downs of embracing the journey of parenting kids with special needs.
For today, at least.
That’s what I will try to do.
This is so beautiful. Thank you.
Thanks for sharing. All of us on this journey of being a special needs mom has to figure out we aren’t a supermom but we are only human. Hopefully, that pushes us toward God. Thanks for a glimpse into your life. It helps the rest of us know that we are normal too!
God gives us grace – why is it so hard to give ourselves grace? I love the words to a song by Julie True: “Mercy triumphs over judgment.” God’s mercy over our own judgment. I’ll take that any day!
I think we should just all agree that daily showers are optional for the special needs parent and that jammies and sweats are perfectly suitable day-wear. Thank you so much for your honesty, Gillian. You set ME free today.
I agree 100%.
Ditto. When I feel like I’ve failed because I’m too fatigued to tackle the to-do list, I am encouraged when I realized I have met my daughter’s most basic needs AND today that’s enough. I join you with letting myself off of the hook when I am drained. God will be our strength. God bless.
Thank you for your honesty. I so relate to this. I’ve been struggling as a special needs mom too. Two boys with ASD is tiring. Sometimes you just want the roller coaster to slow down. Here’s to resting and to renewing our minds.