As a Sibling to a Brother With a Disability

One day, a friend asked me “what is the hardest part of being a sibling to a brother with a disability?”

Without hesitation I quickly answered, living in fear.

Still to this day, even at 38 years old, I have the same exact fear as I did in my sunflower decorated room when I was eight.

What happens to my brother if something happens to my parents?

This is my deepest fear, one that comes with so many factors. But I don’t really talk about it. 

Like…

I fear that with the loss of my parents, Nick will lose everything. It will break him.

I fear the limited resources to help me be his long-term caregiver after my parents are gone.

I fear that the timing will affect my boys or our family and how our lives would need to pivot and adjust.

I fear I can’t be for him what parents have been for him.

The fears never really go away but I have learned to push them down with faith.

If you follow my journey you know I created a nonprofit organization called Puzzle Pieces. In a lot of ways, this gave me a sense of control over these fears.

It’s through serving so many families impacted by disabilities that I know that I am blessed to have a future with limited fears for my brother and me. My purpose has evolved into advocating for families that don’t have that same blessing and helping them navigate their journeys.

To be honest, my situation is rare.

In my home state of Kentucky, we are in a state of crisis for families who no longer are capable of caring for their loved one with disabilities.

Long-term living options are limited. Those providing services usually can’t provide the best care possible because the funding doesn’t support what they deserve.

My advocacy, my purpose, and my energy will always embody creating awareness around creating opportunities for those with disabilities through acceptance and valuing them. 

And that’s bigger than any fear.