Additional Needs

Bumps in the Road

Posted by Jodi Shenal on 25th February 2020 Additional Needs, Advice & Support, Disabilities

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Since becoming the parent of a child with complex special needs, my entire world has been completely remade.

In all the years before this journey began, I thought I had it all figured out.

Life was a smooth, even road. I truly believed that I had an accurate understanding of what mattered most; a grasp of what was ultimately important.

How naïve I was.

When the road you’re on abruptly veers, you find yourself feeling jarred and shaken.

Without warning, the ride you’ve been on, all that you’re accustomed to, suddenly changes course. It’s terrifying.

Having a daughter with intricate disabilities, I have learned to redirect my route. I have encountered beautiful, breath taking sights along this unexpected detour.

My eyes are now open to things I would have otherwise missed; my perspective is less flawed.

As I strive to always focus on the great joys I have discovered, and maintain a positive outlook, sometimes, bumps in the road will cause me to stall. T

There have been ample times when the road has even felt treacherous, causing me to temporarily lose control of the wheel.

Sitting through painful cognitive assessments and ultimately hearing the label “profound” assigned to my daughter.

Witnessing her in pain or frustration, without the ability to verbally express it.

Watching children her own age, and years younger, running, jumping and playing; acknowledging the heavy unfairness of it all.

Panicking when there is a fever; scrambling to identify and treat the cause.

Being afraid to fall asleep at night; scared to take my eyes off her after she’s had an awful seizure.

Listening and praying for breath to return; hating and cursing the monster that is Epilepsy.

Feeling isolated and alone. Wondering why no one else understands.

Seeing her undergo multitudes of tests and needle sticks. Sitting helplessly as she underwent major surgery.

Pleading for vital services and equipment that she needs, time after time, and waiting months and months for them to come to fruition.

Thankfully, through all these road bumps, I always manage to regain control and composure. There is no other choice.

This road is one of adventure. It was not paved for the faint-of-heart.

We will forever experience these “bumps”, but our family will continue to hold steady as we travel ahead, together.

There’s an appreciation that grows within you when you drive this road.

You gain a truly grateful heart. The simple things all at once become the remarkable things.

Bumps in the road of life may slow us down, and even shake us up from time to time.

However, they will never take away from the incredible venture we’ll share.