I don´t know what its like to have a child with CP, and I don’t know what it feels like when you are told the diagnosis for the first time. However, I think we can all benefit from talking about the hard things, the things that we would rather keep to ourselves, in the fear that the other person might not understand. Be that as a parent to their child, or a person with CP to their parent.
Throughout the years I’ve battled with my own emotions and thoughts about having CP. I somehow managed to get through it all and end up as a relatively happy person on the other end, even though some parts of the struggle never ends. When talking to my own parents, and other parents, both through this blog and outside of it I gained a deeper appreciation of all the battles they have fought with themselves. Out of these conversations, there seems to be three different categories to group these difficult feelings and thoughts into: Guilt, Loss and Regret.
Guilt relating to the CP can be a few different things. It could be that you as a parent feel that you are to blame for your child ending up with CP, that it is somehow your fault. Maybe, you didn’t do enough? What if you only had eaten healthier? Maybe you were too stressed during pregnancy? Well let you tell you right now, it´s not your fault. Cerebral Palsy is not genetic, and its causes are difficult to ascertain exactly, but we know it comes directly from a lack of oxygen to the brain. Your child loves you, as the one that cares for them deeper than anyone else, they don’t blame you for the CP, neither should you.
Guilt can come creeping in other forms as well, maybe you feel bad for not being there as much as you could for your child, or maybe you feel you are overprotecting them or sheltering them too much? As someone with CP, I can say that I have felt overprotected or sheltered at times. And sure, it may let to some outbursts of anger or frustration, especially in my teens. Do I hold any sort of grudge or feeling of resentment towards my parents today for this? Not at all.
I’m not a parent myself so I can’t speak from experience, but it seems from my viewpoint that parents of kids with CP balance on a constant tightrope, on one side they want to grant their child freedom and independence, so that they won’t feel so isolated or dependent on you as a parent. On the other side, you know the reality of the world out there, of the bullies, of the judgment of others and of the mental hardships they may have to endure when they realize their dream may be stopped because of the CP.
I think what you have to consider when facing all these difficult situations is this. Your child loves you, admires you, and looks to you for guidance, even if they don’t tell you straight up. They know you are there for them if things get really though. Life didn’t prepare you for the challenge of having a child with Cerebral Palsy. And considering that both the parent and child are just thrown into it head first with no instruction manual, you are doing pretty awesome, just getting through the day.
Just as other parents who do not have a child with CP, do not understand the perspective that you as a parent come from. It’s important to remember that we, as people with CP, view that as “normal”. Life with Cerebral Palsy is all I know, and most likely is all I will ever know, and I am completely fine with that. But because of that it shapes my view on life, my motivations and my thoughts, that are going to be different than an able bodied in some way. Which leads me to the next topic Loss and Regret.
P.S. Feel free to read this post entirely about guilt as it relates to CP.
Loss And Regret
I decided to group these two together because they pretty closely related. If you feel loss as a parent because of the CP, chances are regret follows closely behind. It’s completely normal for you to feel loss as a parent, to feel loss that your son or daughter won’t have the life of an able bodied child. To feel the loss of that opportunity taken away from you, and taken away from you’re child. Its also normal for you to feel regret about all the things in daily life that your child may miss out on as a result of the CP. This does not make you a bad parent. Nor does it make you selfish.
As someone with CP, I’ve felt loss and regret to because of the CP. I felt loss when I realized I had to give up my dream as a kid to become a professional soccer player, and I’ve felt both feelings when I couldn’t participate in something with my friends or felt like an outsider. But as I’ve gotten older I’ve grown to appreciate something that has always been there as a part of the CP, and that is my initial perspective on life.
As I mentioned above, life with CP is all I know, and all I will know. This has some really good benefits. It means that I won’t always feel the need or desire to be closer to “normal”, simply because I have no idea what it means to not have CP, I can’t really imagine it. This can create some conflicts between the person with CP and their loved ones too. Where the parents for example may want to push their child to exercise more, stretch more, or try harder to walk or walk better, the person with CP, may be content with their functional level as it is, and may not see the point.
We both have a responsibility here. The parent should try to understand this, that we don’t necessarily want to be just like an able bodied. Some may, but that may lead to more harm than good. You can’t change the CP; you can’t cure it, at least not right now. And because of that, if you are constantly want something you cannot have, and constantly hating what you have and what you are, you are going to be pretty miserable. Therefore, I would advise you, as a parent to help your child accept their CP rather than fight it. It is not your enemy, nor is it theirs, its a part of them.
As people with CP we also have to understand that even if we don’t always see the change the point in stretching or exercises, or even surgeries, we should try to think of the fact that we want to stay happy in the future. The work that you put down now, can be really important later down the road. I used to hate this kind of reasoning however, and I am not expecting you to like it either, so if that doesn’t motivate you, try to find smaller more achievable goals of improvement that you can see in a shorter time period.
Also, remember that because your parents want you to exercise more, or walk better or what have you, it doesn’t mean they think you aren’t good enough, you are, and its not about that. They view life from their perspective, and what they have been able to do and enjoy in life, they just want you to feel many of the joys in life that they have, because they love you, not because they don’t think you’re good enough.
It is my hope that we can continue to learn from each other, and grow together. That way, we can heal each other and the scars that may open, so I hope you will accept and embrace this open letter as my contribution towards that.
If you have had any of these feelings and experiences, either as a parent or as someone with CP, please feel free to comment below and share on your favourite social media, it really helps us grow and write more of these articles! Thank you!
Cover photo by https://www.flickr.com/photos/zappowbang/