Do you ever think to yourself, what if life where different? It seems we probably all ask ourselves these questions on occasion. Was it really a good idea to take that job or should we have studied a little longer for that test. But, what about feeling responsible for things beyond your control. Discussing cerebral palsy with the parent of someone who has CP can be emotional. It seems challenging for them to let go of having any responsibility for what might have caused the disability. Those moments in the hospital room that alter everything about how another person will live their life. Many times, if not every time, the situation doesn’t fall on the shoulders of any one person. Although, these circumstances can often be felt as traumatic events. Any traumatic event can be defined as emotionally disturbing or distressing. Having cerebral palsy, it can be challenging understanding the perspective of parents. However, it seems important to make attempts of recognizing were parents are coming from. We all are in this together and my mom always says “things happen for a reason,” which makes sense in my life.
When thinking about the parental point of view with cerebral palsy, my curiosity becomes heightened. There were questions put together by myself for some parents who have children with CP. The answers seemed as emotional to read, as they may have been to answer. Blame was one of the words striking my emotions when reading the text. Feelings of guilt over children being put in harm’s way as they enter the world. Or in my case, getting stuck and losing oxygen. But, when people get hurt during any kind of accident, is someone always at fault? It seems logical to look for blame as relief during any tragedy. A tragedy can be an event causing suffering, destruction, and distress. Some examples with this definition would be a serious accident, crime, or natural disaster. It feels as though gaining cerebral palsy could be thought of as a serious accident. The search for blame resulting from a serious accident however, might be holding back any gains associated with having the disability. Did you notice gaining cerebral palsy……just making sure you’re awake. The reasons lie in attempting to look at something perceived as negative and turn it into something positive. That seems to be our goal.
There is no way to imagine the emotions of a mother. Especially for me, without having children. A child is such a precious gift to parents and their impact so great. Even with children who don’t have any disability, their successes and falters seem felt greatest by parents. Having kids with something different may naturally enhance those emotions. The impact of any disability seems to bring about more feelings of uncertainty than would raising an able child. Something that didn’t occur to me while working on developing these questions. Which could have been the unintended emotional impact causing some questions to be unanswered. But, when we look at the future of someone with cerebral palsy, it seems important to see possibility. The disability can improve with hard work on motor function and when the tragedy hits, it might not signal the end of anything. Any life of someone with a disability will most likely be different. However, those differences can be turned into something unique. Turning around the outcomes of cerebral palsy into something positive.
When accident strikes in the middle of a hospital room, my guess is things go dark. No one knows in those moments how things will turn out for the child. After everything settles and the understanding that this new born child has cerebral palsy sinks in, we begin to realize life is altered. As the first few years go by, thoughts might turn into what it could be for the child to grow. Some further answers to my questions talked about worry over being included, or the idea of being judged about being disabled, but also the hope of a child being emotionally fulfilled. Life goes on and the unanswered questions inside a hospital room begin finding answers. It becomes left up to the individual with the challenge to take on those responsibilities. We give effort each day to improve the symptoms cerebral palsy has given. It doesn’t seem too far off from the work anyone puts into whatever their biggest challenge might be. All of the sudden, instead of being excluded for having this disability, inclusion begins happening for our inspiring perseverance. If these things can be accomplished, maybe cerebral palsy turns into something good.
It seems most of us have probably heard a horse can be lead to water, but can’t be forced to drink. Someone who has cerebral palsy is not a horse, it’s just a figure of speech. But, we can seemingly move along those lines when thinking about the worry of a parent. Maybe most of these concerns boil down to one overriding agonizing question of whether the child will give up. My journey has been fraught with temptations of giving into the idea of cerebral palsy winning. In this we mean giving into the feeling of discouragement, that CP can’t be helped. The thought of our disability overrunning our body and stealing our ability to function at all. As an individual with CP, our work on improving mobility has to continue, because if we give up life could become more confining with each year. A parent can show us the way to the water. They can do all the research and find specific ways to help us improve the cerebral palsy symptoms. However, it seems to come down to us putting in the work and drinking the water. Part of our job on earth seems to be embracing the challenge cerebral palsy presents and working hard. Then we begin easing the fears and worry of a parent, in turn becoming what few are given the opportunity to become, an inspiration.
But, what if the events inside the hospital delivery room hadn’t taken place? If the child wasn’t born with the disability, but instead was born perfectly healthy. The question seems to be an interesting one to ponder sometimes. Having been raised with faith, another saying has stuck with me through the years. That particular thought has been, God doesn’t give us anything we can’t handle. Those words from my mom have provided comfort in times of struggling against the things cerebral palsy takes away. As we wonder down that thought pattern, we can almost feel like we were chosen to be different. There was something leading God to believe we had the ability to handle the challenge of being disabled. We have the strength inside to work hard and ease the worry of our parents in regards to our future. Someone seems to be challenging us to drink the water, we are being lead to. In order to have a life full of enjoyment there probably isn’t any way around accepting the challenge we’ve been given. Being given a disability can mean we are looked upon as different, looked upon to see how we handle those differences, and probably looked to for inspiration. If things happen for a reason, we’ve been given the disability and asked to fight. We seem required to become the one who wants the ball as time expires. There really is no way to blend in, so what do we do when we are asked to stick out?
Embracing the challenge seems the most difficult part and probably the biggest concern. What if we weren’t given cerebral palsy, well, there’s probably no way of knowing the answer. It would most likely have made life easier and eased stress of parents. But, the only way to create a gem is to apply pressure. Cerebral palsy in itself seems to apply pressure to life. Not just the life of those who have the disability, but seemingly can add some pressure to those around us as well. However, that pressure doesn’t have to be a negative thing. If we embrace it, we seem motivated by pressure, to work harder, dig deeper, and achieve more than we thought possible. So, what if those seconds or minutes leading to cerebral palsy hadn’t happened? Maybe we wouldn’t necessarily be better off, because anything worth achieving is never easy. Everything and everyone around us would be different, remember without pressure there may be little beauty. What if we hadn’t been born with cerebral palsy…well, life just might not be as good.
A Journey With Cerebral Palsy 