I must have left my badge of courage at home today - my armor to guard my heart. I had to go grocery shopping which means just me, two boys and a bulky double stroller. I try to convince myself that I can do all things - after all this is my life - for the rest of my life. Special needs aren't going to exit anytime soon. So I've taken on the attitude that I must find ways to do things that are simple for other people, but complicated for a mom like me.
Noah does possess a handicap parking pass which often causes people to look at me like a lazy mother that just doesn't want to park in the North 40 during the holiday season. People pass judgment quicker than I can blink. When I entered the store a pregnant mother points at me with her husband and says "that's the mom I told you about thinking that she is too good to park far away." I wanted to say something. I wanted to walk up to her and tell her how the cows eat the cabbage, but really I was mostly hurt and heartbroken. So I proceed down another isle trying to shrug it off when I am stopped by a lady who I am sure meant well but bends down to Noah in the stroller looks him up and down briefly and then stands and says "its cerebral palsy." "It's?" Noah is not an it. He is a person, a little boy. That's great she wanted to play diagnosis, but it was rather impolite and it sent a further sword through my heart. Usually I don't mind talking about Noah's special needs, but today was just not my day. I nodded and kept going. I didn't want to engage in explaining Noah. I round the corner to pick up spaghetti sauce only to find my third enounter with another lady who asks why Noah looks so sick. I tell her he isn't sick. And she asks why his cheeks are so red, and his skin tone is flushed and he looks like he is fever stricken. I explained to her Noah's cheeks were merely chapped, and that he wasn't ill, thanked her for her concern and literally bolted to the check-out lanes before I busted out in a thousand tears.
I passed a Starbucks on the way out, thought about trying to find something to comfort my woes, only to feel even worse as I reminded myself that Noah doesn't get to enjoy such luxuries so why should I be able to? So then the tears just flowed, I load Luke in the car who offers me his pacifier if somehow that will make me feel better, and Noah just looks at me with this angelic expression like he's sorry. And that just made it worse, because none of this is Noah's fault. This feels so hugely unfair that this is his life. I am the one who is sorry - sorry that I cannot fix it for him. I feel utterly helpless in making things better for him - making people kinder along his path. I do my best to really have some thick skin when it comes to what people say, the stares the points, the gossip - but it's so exhausting to imagine that I have to face these types of things on a regular basis as the years go by.
I rarely have the opportunity to watch television. However, the television is often on in the kitchen as noise as I go about doing laundry, or cleaning the kitchen and I overheard two shows the other day discussing special needs in an unfavorable light. It is no wonder our world has such a negative view with people who have disabilities when these messages are being sent out to the world - to our children who hear this and think that those with special needs should be discarded members of society. Why isn't anyone ashamed of this? Why does everyone let it happen? Even if you aren't directly affected by someone who has special needs this shouldn't be okay with you - with any of us.
The first show was; The Doctors, discussing the plight of a mom who refused to "pull the plug" on her siamese twins after being coached and convinced that her children would have no quality of life. Her twins did eventually pass away, but she received some heavy criticism from this panel of so called "doctor celebrities" on TV, that she merely caused them prolonged and unnecessary suffering. So as I stewed on that jaded one-sided television commentary, I'm hit with yet another show as I am making Noah's nightly bottle - Harry's Law as I am listening to the comments of character who is a mother to a special needs child who dies as a result of his neck being broken and it is presumed the mother did it as a mercy killing. She of course denies involvement with the killing of her child but does not deny that he is "better off dead," after all he'd be just like a "houseplant." And doctors were very right in that he'd have "no quality of life." In the end it is found that the nurse preformed the "mercy killing" of this small child and not the mother. Does that make any more right? I just can't believe we are sending these types of messages out that are so one-sided. First I really think that doctors and nurses should never ever, ever, ever tell a parent that their child will have no quality of life. They do not have a crystal ball... God is not whispering in their ears. How can they even predict that? I would love nothing more than if the medical profession ceased instilling in parents that there is no hope. There is always hope. I can tell you from first-hand experience that although Noah is very physically challenged, he has a quality of life. He is loved - a thousand times over, he is cared for with everything we have, he is happy, he is healthy and he is living. Every life matters not just those that are viewed as "perfection."
Sometimes I find the things some people think and say to a special needs family simply appalling. Another mother stated that someone called her special needs child a "flushable." Society generally thinks we have come so far in discrimination...not so. We still judge color, we judge gender, we judge age, we judge sexual orientation and we certainly judge people with disabilities. How do we fix it? I don't have the answers I wish I did. Sometimes I think if I write about Noah, write about our family that maybe someone out there may stumble upon it and genuinely think twice about what special needs means, what our family is like, the message behind, hope, love, and faith in all things possible. Yet am I so naive to think that one person or one child like Noah can change the world? Even change just one person's perception? I would rather you turn your back on me, than look me in the face and ever call my child a "flushable."
We are human just like you, we feel we hurt, we crave love and acceptance just as much as the next person does. We want opportunities for our children - we have hopes and dreams for them just like the rest of the world does. We are not that different from the rest.
by Stacy Warden
is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License