Disability is such a broad concept. It can include anything from rare genetic disorders to traumatic brain injuries. And as parents of kids with disabilities, it means our lives are just as diverse. Diversity and difference often walk hand in hand with disability. It’s a given. Even parents who have kids with the same diagnosis can have different experiences. And as parents, we adjust to our normal. Some parents learned ASL (American Sign Language) in order to communicate with their kids. Others learned how to feed their children through G-tubes. And others modified their diets completely. But the one constant I’ve seen over and over again is that every parent I’ve met rose to the challenge, regardless of how intimidating the task appeared.
That’s the universal thread I’ve seen in all the moms I’ve met who have a child (or children) with disabilities. Challenges don’t hold them down for long. Every single one gets up, dusts off their pants, rolls up their sleeves, and gets into the muck and mire of their child’s world. They do what needs to be done, becoming well-versed with not only their child’s disability but becoming advocates for them as well. This thread appears in each and every story regardless of the disability. And it’s awe-inspiring. Yet at the same time, it can also be intimidating to those starting out on the journey. It’s easy to look at other mom’s lives and feel discouraged. However, I want to remind you it didn’t start that way. Nobody glided into the world of disability effortlessly. What you’re seeing was nurtured and grown over time.
Looking at my life
Did I feel qualified to be the mother of a child with a disability? Nope. I had no idea and absolutely no training whatsoever. Nothing. I was thrown into the deep end of the pool without a life preserver. I had to learn to swim or I was going to drown. So I learned to swim. It was tough in the beginning and a lot of times I felt alone and scared of messing up. But as time passed, I found my rhythm. I learned to work with my weaknesses just as I rely on my strengths. Now I have over 25 years of experience raising a son with a disability. I’d like to think I’ve matured a lot in those years. And yet at the same time, I still encounter circumstances in which I have no idea what to do. I still find myself feeling overwhelmed and frustrated. Those moments happen sometimes. And will continue to happen. But I’ve learned to take a deep breath, embrace the feeling, and push on. This is my son and he is worth it because he’s a precious gift.
If you’re feeling overwhelmed
So if you find yourself overwhelmed by the disability world – and yes, it’s a different world with its own language and culture – be encouraged that no one ever stepped foot into this world knowing it all. Most came unexpectedly and unprepared.
Everything we know, we’ve learned on the way. Bit by bit. Step by step. In the beginning, it’s going to feel hard even overwhelming. But that’s the case any time we learn something new, it takes time before we get the hang of it. It’s called the learning curve. But with perseverance, dedication and consistency we become proficient. This ability to rise to the challenge is the universal thread in every mom’s story.