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Watching mighty waves crash against a beach shore has always been one of my most favorite things.

The ocean is captivating.  In all its strength and beauty, it creates a sense of tranquility.

In the past, the beach was a serene place of reflection for me.

Relaxation and peace.

On our family’s beach trip this summer, a last minute, quick get-away, I found myself instead feeling twinges of grief.

The bright sunshine wasn’t quite warming my soul as it used to.

While I loved watching my son play in the surf and making incredible memories that day, I also caught myself dreaming of the typical beach experience that my daughter and I can’t fully enjoy together.

My son is fourteen and it made my heart soar to see him play and enjoy the day with childlike excitement.

It was wonderful being there with him.  I also sadly wondered to myself,

“How many more years do we have of making memories like this?”

“How long until he’s too old to enjoy an afternoon like this with his Mom?”

As children grow, it’s hard to swallow that these moments of childhood are fleeting…. they don’t last forever.

We want to soak them in and hold them tightly in our grasp.

Then, there is a total flip-side to this that parents of children with special needs tend to encounter.

There is a completely different heavy-heartedness that creeps up now again.

Grief comes and goes in waves, just like those that crashed onto the shore that day my son and I spent on the beach.

My daughter is seven, and is not yet able to walk or talk, due to a rare genetic disorder.

On this recent beach trip, I couldn’t bring her down onto the sand, into the bright sunshine.

She had not slept at all the night before, and every sensory assaulting aspect of the beach could have triggered a seizure.

As I watched my son write in the sand, and as we picked up seashells together, I noticed the other moms.

I saw little girls running and frolicking with their siblings.

Then, there it was.

The sorrow that hits like a slap to the face, out of nowhere.

I found myself wishing from my core that my daughter could do that; that she could walk with us and jump and splash in the water with her brother.

In that moment, I longed to see her enjoy one of life’s many adventures that disability takes away from her.

Instead of her having to sit inside with her Daddy (although he’s her favorite and they enjoyed a perfectly good time together!), I wanted this day to include her.

That wave of reality nearly knocked me over….It made me stumble, but I didn’t let it drag me away.

When the waves of grief recede, you remember all that you have to be thankful for.

I am so grateful for my children.  Being their Mom is the greatest gift.

They’ve taught me what matters in life and what is truly most important.

I know that as time goes by, I’ll have more sad moments watching my son grow up, desperately holding onto his innocence and childhood.

At the same time, I also envision him going on to do incredible things in life, and that fills my heart with happiness and great pride.

Next time we visit the beach, maybe, just maybe, my daughter can come out with us and feel joy…

She’s been working extra hard on taking steps, and I hold onto hope that one day, with her hands in ours, we’ll help her walk along that shoreline.

She’ll laugh with her big brother.

She’ll feel the tickle of the water on her tiny toes.

She’ll experience giant waves of bliss; as we do, just having her in our lives.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

View Jodi’s Profile

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