How to live a balanced life when a child has CP

My son was four years old when Emma was born.

My son was four when he met his little sister. In the early years – and even now – it was hard to maintain a balanced life that gave him a sense of normality. My husband and I try our darndest to give him a happy childhood, but we can’t change the fact that his sister has CP. There are days when it’s really not easy to be balanced and yet, despite this, we marvel at our boy’s resilience, patience and compassion.

Having Emma as his sister has given him many good qualities that make him a better person. This is what I tell myself and believe. However, there are days when something happens to make me doubt his future well-being.

Are families with a disabled member always unbalanced?

Just the other day his class teacher and I had a meeting and it became clear that she assumed that due to his sister’s CP, we must be neglecting our son! She could not imagine that we were striving to be a balanced family. She even gave me a newspaper article on the siblings of kids with disabilities. The title said it all: The Shadow Kids. The gist of the article was that the “healthy” child is neglected because of the amount of care their sibling requires. My biggest fear is that our family will somehow become dysfunctional.

To confront my fears, I have spent time reading various academic studies and, on the topic of the long-term effects of having a sibling with a disability on a healthy child, the academics are split. Some studies have shown negative effects, but others indicate that healthy siblings come out more resilient and mature as adults. What makes the difference? The answer seems unclear from the academic point of view. Certainly, the degree and type of disability play a major part. But, it also is clear to me that it’s not simply having a sibling with a disability that predicts your emotional outcome. The outcome can be influenced by the manner the parents (and family) respond and cope with this unusual situation.

I remember when Emma was about one year old (we knew that she had CP by then) and we struggled to imagine the future. I struggled to visualise her as a toddler or an older child or teenager. I could not. I dared not. I was desperate and, emotionally, we were at rock bottom. I cried myself to sleep on many nights and, to try and protect my son from seeing his mother fall apart, I would cry where he could not see me: in the car on the way back from dropping him off at school, at night as I packed the dishwasher and as I stood in the shower. (I do not recommend crying in the car while parking – two fender-benders in our garage cured my tears instantly.) Maintaining balance was, during these years, just acting balanced. Inside I was far from it.

There were many things spiritual, relational and psychological that helped us through this time and they are all worthy of singling out. But one of the key things that kept me going was that I needed to be strong for my son. I can only explain it as a primal drive, it kept me going through the motions. Even though my heart was broken, I could look at him and laugh out loud at his jokes or gaze proudly as he achieved new milestones. My son kept me sane and kept at least one of my feet planted firmly in the world of “normality”;. However, I often felt like I was caught an either/or situation. Do I fight for my daughter and potentially neglect my son? Or do I institutionalise her and “save” my son? How can I achieve balance? A wise friend I consulted about this conflict set me straight. She said I must fight for Emma and that my son  needs to see me fight for his sister. She convinced me that seeing this was crucial for his sense of contentedness.

Changing our measure of success and balance

My husband was stronger than me. He had clarity about what needed to happen. One day I was talking about the constant sadness and this feeling I had that life will never be normal again. I complained that we were in a hole and no matter what I tried – my tools, medicine or surgery – I could not get us out. His reply was a story worth sharing.

He told me about a colleague who had recently been involved in a terrible car accident. He survived but would be scarred for life with many motor and cognitive difficulties. My husband asked him how he coped with such a life-changing trauma – he answered that when a man ends up in a hole because of a traumatic event, then most men would say: “I am in a hole, and only when I get out of this hole, can I “plant my flag” to claim any achievement or normality in my life again.” He said that if a person does this he will always feel a failure because with holes this deep and this drastic, it’s likely he might never get high enough to ever plant that flag. He will always feel incomplete and unbalanced.

So, he had decided that instead of trying to (fruitlessly) get back to where he was before the accident, he would say: “Okay, this is where I am – and he’d plant his flag there. His claim was: “This is my new normal or equilibrium, and now I can go on with life’s journey”.

He stressed that the important thing was not to see this as a once-off event; you have to keep planting your flag, wherever you are, every day. This takes the sting out of striving to get somewhere that you can (possibly) never reach. After a period of regular flag planting, you will be able to look back and see how you have built steps out of the hole.

My husband said to me: “Erika, let’s just plant our flag today.”

This reminded us to keep planting our flags.

Soon after this conversation we registered our car in a new district and my husband came home with the new number plates. He was inspired by our conversation and the number plate read: Staan 24/7. In my home language, Afrikaans,”stain” means to “stand”.

We decided if we cannot move forward in a battle, we will prevail by just standing, and planting our flag there. We decided, to stand together as a family and fight for each other together.

Teaching our kids balance

We celebrated my son’s 10th birthday recently. I look back on the last five years and I see that the hole doesn’t seem as deep as it did five years ago. We have moved on and up. I don’t cry so much anymore, and on some days, I even feel that we have reached a kind of equilibrium.

Scientists say children learn most of their behaviour by copying what they observe around them.

I don’t know how my son will remember his childhood – if he will see himself as the shadow child or something else. I do not know if I am making the correct choices as I try to raise him well. We remain firm in our choice to teach our kids to be part of a family who stands and faces life together.

While I cannot see the future for either of my kids, there is one thing I do know, that when the time comes they will always know when and where to plant their flag.

 

PS. I want to thank you all for all the positive emails I have received after starting this blog. It is hugely appreciated and it has inspired me to keep writing.

Many of you have asked me to write more about nutritional support. There’s so much to say, so I think this needs to be more than one post and I am doing research and working on it now. Keep an eye out for my first nutrition post soon. Until then, please comment on these posts if you have questions or would like to know more, I would love to hear from you.