Somedays, It’s Hard to Find the Joy

“I wish my son was happy all the time like Bubba.”

As I read those words, my heart instantly began to race. My stomach started twisting in knots.

I’ve heard these words before. And although well intended, I couldn’t help but think to myself…Is that how people think he is ALL the time?

If so, then I’m doing something wrong.

I’d be doing a disservice to you, my family and the autism community if all I talked about was the positive.

I created this space, this community, to inspire others and bring hope from our family to yours.

I share minutes … sometimes only seconds and small glimpses from our day.

I love sharing Ethan’s joy. His smile. His funny personality.

It makes me happy to share those moments with all of you.

But I NEVER want a misrepresentation of what “real life” looks like for us.

For HIM.

While I’m happy to hear you love seeing our sweet Bubba and his beautiful smile, please know that not every minute of every day is joyful.

Some days, it’s really hard to find the joy. It’s hard to get through the day without one of us breaking down in tears.

Sometimes, it’s difficult to find the silver lining.

Like many of you, this pandemic hit us really hard. It flipped our world, HIS world, upside down.

It has brought out new behaviors in Ethan we’ve never seen before.

It has resurfaced old behaviors that we hoped to never see again. And regression…it’s real.

It’s scary.

He is struggling on a level that’s hard to put into words. And maybe that’s why I’ve been so hesitant to share this with you all?

It breaks my heart that he is struggling so badly right now.

I’ve cut back on my hours at work to be hands on with him and give the undivided attention he needs throughout the day.

We are working hard with his therapists to help support him through this very challenging time.

We are working diligently day in and day out…Behind the scenes. Behind the highlight reel. Behind the cute pictures and videos.

I know there are other families out there that NEED to hear this.

YOU ARE NOT ALONE.

We are in the trenches with you trying to get through another day.

We are tired and exhausted and feeling defeated more times than I’d like to admit. I feel the weight of the world on my shoulders and question myself every single day.

We have been in “survival mode” for the past few months and we are desperately hoping for better days ahead.

So when you’re seeing these small snippets and quick moments of joy, please remember this…We hold onto the joy and laughter on days that are really difficult.

Outside play might be the only time he gets to truly decompress and let himself be happy.

I share our good with you to bring light into your social media scrolling.

We embrace these times throughout the day to keep our spirits lifted.

We are grateful for every happy moment, smile and belly laugh and never take any of it for granted.

These special moments give us strength when we feel like giving up. And we always hold onto hope.

Always.

And I pray that you do too.

Written by, Christina Abernethy

Christina is a dedicated wife, mother of 3, and passionate advocate for people impacted by disabilities. She has served on local committees, coached an adaptive cheerleading team, and won awards for successful fundraising endeavors including those for “Team Bubba,” honoring her son with autism. She is the founder of Love, Hope and Autism and is proud to be the coordinator for Changing Spaces Pennsylvania, a movement to build accessible restrooms with powered height adjustable adult sized changing tables across communities to promote inclusion. She is working with legislators to pass a bill in Pennsylvania that would require such facilities in hospitals, airports, museums, rest stops, malls and more. Christina is committed to spreading a message of heightened awareness and acceptance of differences, ultimately inspiring hope. She is also a coauthor of the book titled “You Are Not Alone: Stories, Resources and Hope From Autism Moms”

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.