Let’s face it. If you’re raising a child with a disability, then your life is anything but typical. More like fragile, complex, overwhelming, exhausting. After battling the everyday challenges that never seem to leave you alone, there is not much left in the tank. You may also be in the situation where caring for your child for the rest of your lives is becoming more and more real. The older you get, the more difficult it will become to embrace that reality.
Not surprisingly, families of persons with disabilities are at a high risk of relationship breakup as they slog through the day-to-day stresses of trying to provide just the basics for their child. They are less equipped to deal with even the simplest of unplanned and unexpected events, sometimes just one step away from a complete breakdown.
Rather depressing, I know. And perhaps I’m just describing my world, not yours.
Don’t get me wrong. Most days, I face the world with energy, hope and joy despite all of these challenges because I know that Jesus is with me on my journey. But there are times when I have no energy, I’m drained of every ounce of hope, and joy is non-existent. Like the other day …
WHAT IF ...
I lay in bed, unable to fall back to sleep, and my mind started playing with my overtaxed state-of-being. I started down the slippery slope of wondering how I could carry on with supporting Ben if something happened to Jan. You see, she had just left on an early-morning, work-related trip stateside and I was alone, and would be for the next 3 days.
My mind flashed to a TV ad about cancer prevention and research. It displayed the kind of images that can’t be unseen. It showed a man lying in an empty bed, staring at the ceiling. His wife had recently died of breast cancer and he was trying to figure out how to keep living without her. The visuals were so powerful and the feelings of loneliness and sadness enveloped me.
That morning, I felt a tinge of what that loneliness might be like, reaching over to where Jan would sleep and finding her not there. What would it feel like if that were forever? And then I thought, with the heavy burden we’ve been asked to carry for the last 24 years, could God ever let this happen to us? What purpose would that serve?
One of us will likely outlive the other, leaving that person alone to take up an even heavier cross. I can’t tell you how many times we’ve had these types of conversations, and when we do, I can never finish them because they always leave me without hope. And living without hope is not living at all.
To be completely honest, if I had to face this world without Jan, I worry that my faith may not endure. But I also know that living without faith means living with fear. So, because Jesus tells me He will not abandon me, I have to remind myself not to be fearful of these unnerving thoughts.
Reminding myself doesn’t always work because they are only words. The thought of an empty bed easily overpowers mere words. But what I’ve learned is that the more I reflect on the notion that my faith can overcome my fears, and I actually practice these words, I slowly see them becoming more and more real. Like peeling back the layers of the proverbial onion, the more I practice, the more I develop a new level of understanding and a new ability to see things that I couldn’t see before.
I know that I’m not walking this journey alone, that everything will be ok. I need to say this everyday.
Oh … and by the way … I don’t fear having to live out my days supporting Ben. In fact, I’m learning to thrive on this opportunity and learning how to bring the joy to all that we do.
Faith. Hope. Joy. They are there for every one of us.
Mike is an author, speaker, and inclusion evangelist but, most importantly, he is a parent of a young adult with multiple disabilities, and have invested a lifetime to helping him become the person he is meant to be.
As co-founder and chief motivator for SoaringFamilies.com (to be launched very soon), he is driven to help persons with disabilities and their families find their voice and place in the world. SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value.