most vulnerable members of society" Joni Eareckson Tada
Having a child with a severe disability gives you an insight to on how people perceive the value of a life. There have been so many things in the news lately ranging from a parent's right to determine end of life decisions for their child, to those declared medically "brain dead" and the rights of an unborn child, that likely could be born with a disability. Doctors love to throw around terms, not medically viable, not compatible with life, has no restorative potential, or even will have no quality of life. Yes these are real terms that myself and so many others like me have personally been told. You might be an outsider looking in and saying to yourself, gosh those poor parents if only their child had not survived... they'd be so much better off. But that couldn't be further from the truth. People are naturally curious and often ask me, are you glad Noah is here with all the difficulties in life that he faces and that you all face as a family? The answer will always be yes. A part of me will always be broken. I can't fix the pain that will has planted itself firmly into the depths of my soul. I live with an emptiness, a wound that will never heal. But that wound would be an immense hole in my life had Noah not been revived.
Perception often is that Noah somehow himself wouldn't want to live like this - in a broken body not capable of talking, crawling, walking or being able to feed himself. That he isn't happy. That he lives a miserable existence. Those are the people who don't know what it is like to hear the laughter in his voice, to experience the innocence of his tender smile, the touch of his hand which feels like a peace of heaven on earth, the joy in his eyes when he accomplishes something he is working on, the excitement he displays over things in his life that he enjoys. He is worthy of life. We all are. We all are deserving of a chance to breath, a chance to live, a chance to thrive, a chance at recovery.
As a society we have taken out the God factor where hope and faith are silenced. Words like impossible and never take their place. We battle for the right for life and death in medical hospitals and courtrooms all across the country. God has no place. They've edged him out of the equation, trying to extinguish potential for miraculous and even what we used to know as divine intervention. So what you say - I don't believe in God, miracles, divine intervention... it's all hogwash. It's because God hasn't yet given you your own personal cross-roads, that fork in the road that forces you to decide will you buy into the theory of never and impossible? Or will you cling to hope and faith? Remember to chose wisely there is no going back.
A part of me believes this stems from what people don't understand, what they have not experienced, the fear that is instilled in them. These perceptions are fed by social and news media encouraging us to focus how we view placing value on lives that are "whole" and "savable." The nature of the human ego says I cannot put myself aside to put another's needs before my own. Which is rather a key requirement in the land of special needs. It's a sacrifice that people try to convince you is not worthy of your time and efforts. And after all who wants to spend money and resources on someone that isn't well... who is less than perfect? It's just easier to terminate and eliminate the problem - the person who isn't in the eyes of society is no longer "whole." Let's pull the plug they preach... the heart beats, so what the brain isn't fixable... the life growing inside someone else is in a dead body! A fetus is going to have disabilities, so let's make sure it just doesn't have a chance. I've personally met some incredibly inspiring children by connecting with other families who have children with special needs. They all steal a piece of my heart, many of them wouldn't be here if their parents had sold out and believed that these little lives were not compatible with life. Life is not perfect for any of us, but it's so bittersweet and beautiful at the same time. We all know that these little lives are so thankful that we believed in them and gave them a chance at life - despite all those who whispered impossible and never in our ears time and time again. We belong to a club where all things are possible!
My challenge to anyone who reads this blog is to question and challenge the way you think about those with disabilities, those that doctors perceive clinically dead, those that will be born not compatible with life - the lives medical professionals deem not viable, have no quality of life or restorative potential. Give consideration to those that are behind these lives giving it everything they have and then some. This is truly the first step in changing how those with disabilities, illness and inflictions are viewed in this country and all over the world. Their lives have value - tremendous value.
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.