An Open Letter to Parents With Children With Cerebral Palsy

I don’t know what it’s like to have a child with cerebral palsy (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 we would rather keep to ourselves in 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 end. When talking to my own parents and other parents, I gained a deeper appreciation of all the challenges they faced. Out of these conversations, there seems to be three different categories to group these difficult feelings and thoughts into: guilt, loss and regret.

Guilt

Guilt relating to CP can mean a few different things. It could be that you as a parent feel you’re to blame for your child ending up with CP and that it’s 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 isn’t “a hereditary condition,” according to CerebralPalsy.org, and its causes are difficult to ascertain exactly. Your child loves you as the ones who care for them deeper than anyone else. They don’t blame you for CP and 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 I have felt overprotected or sheltered at times. And sure, it may have led to some outbursts of anger or frustration, especially in my teens. Do I hold any sort of grudge or feeling of resentment toward 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: the bullies, the judgment of others and the mental hardships they may have to endure when they realize their dream may be stopped because of 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’re there for them if things get really tough. Life didn’t prepare you for the challenge of having a child with cerebral palsy. And considering that both the parent and child are thrown into it head first with no instruction manual, you’re doing pretty awesome just getting through the day.

Loss and Regret

I decided to group these two together because they’re pretty closely related. If you feel loss as a parent because of CP, chances are regret follows closely behind. I believe it’s completely normal for you to feel loss as a parent and to feel loss that your son or daughter won’t have the life of an able-bodied child. I believe it’s also normal for you to feel regret about all the things in daily life your child may miss out on as a result of CP. This doesn’t make you a bad parent. Nor does it make you selfish.

As someone with CP, I’ve felt loss and regret, too, because of 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 CP, and that is my initial perspective on life.

Life with CP is all I know and all I will know. This has some really good benefits. It means I won’t always feel the need or desire to be closer to “normal,” simply because I have no idea what it means not to have CP. I can’t really imagine it. This can create some conflicts between the person with CP and their loved ones, too. Whereas the parents 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 we don’t necessarily want to be just like an able-bodied person. Some may, but that may lead to more harm than good. You can’t change CP; you can’t cure it, at least not right now. And because of that, if you constantly want something you can’t have, and you’re constantly hating what you have and what you are, you’re going to be pretty miserable. Therefore, I would advise you to help your child accept their CP rather than fight it. It’s not your enemy, nor is it theirs — it’s a part of them.

As people with CP, we also have to understand that even if we don’t always see 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 you do now can be really important later down the road. I used to hate this kind of reasoning, and I’m not expecting you to like it either, so if that doesn’t motivate you, try to find smaller, more achievable goals of improvement you can accomplish 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 it’s 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, so I hope you will accept and embrace this open letter as my contribution toward that.

A version of this post originally appeared on CPExperience.

Lead photo source: Thinkstock Images