My Life as a Parent of a Child With a Disability Is Like the Movie, 'The Matrix'


I often wonder to myself if others are wondering what my life is like. When I’m at the grocery store and observe a concerned stare at my son’s abnormal breathing pattern, or when people innocently inquire about his age and their face betrays them with a hint confusion as to why he isn’t running the halls. Some make assumptions, dance around the giant elephant that is our life. At times, others with kind caution mutter phrases such as, “I just don’t understand how you do it” or “I don’t think I could be strong enough.” And every so often, people forthrightly ask me what it is like to be the parent of a child with a disability.

I’ve heard people liken this life to an unanticipated trip to a different country than a family had originally planned to visit. It is still a beautiful journey, but not what had been anticipated by any means. I empathize with this metaphor. But for me, where it falls short is that for parents of a child with disabilities, the trip doesn’t merely end with life returning to normalcy back home. It is a life-long venture into an entirely different reality — a reality that has always existed to the general public, but more often than not, goes unnoticed.

For lack of a better metaphor, life for me is more like the movie “The Matrix.” I have swallowed the red pill and cannot go back. The veil has been lifted, the wardrobe door opened. A new world just below the thinly cloaked surface of reality has been revealed to me. I simply see the same world differently now.

 

My world now consists of doctors and therapists, of celebrating the little things and asking myself strange questions such as, “Will my child ever walk, talk, or take care of his personal needs? Will he live to be an adult?” This is my world now.

So when I’m asked what it is like to be the mother of a child with a disability, it is never a simple answer for me because it is a life rife with paradoxes. It is both beauty and pain, fear and white-knuckled-clinching to a faith I fight to maintain; it is trusting and believing when I cannot see, and constantly relying on peace when circumstances demand there should be none. It is abiding as “abnormal” in a sea of “normal” surroundings, and wading in the occasional loneliness that accompanies a life marked by limitations. It is a venture no one expects to take and one in which there is no adequate preparation.

It is, however, worth both, the joyful and painful effort of journeying through. I see the value of life in this unveiled world in my son’s full-body smile, framed by the sole dimple on the right side of his face. In how he relies on me, and even though he cannot and may not ever verbally communicate it, how I know he trusts me. I see value in how it daily humbles me to serve him when he’s screaming, and in the pointed moment each night of realizing how little control I actually have as I strap on his monitor belt to assure he’s breathing. I see value in how his life daily impacts others and how he has taught me what it means to sacrificially love with every part of my being when no one is around to give me recognition for doing so.

Yes, there are no adequate words to describe the life of a parent of a child with disabilities apart from this: I genuinely love being his mother.

His life is an overflow of beauty, purpose and infinite value. Being his mother has been the greatest and most refining gift. And I know that come what may, in this new world I now find myself in, this is truth.

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