A mother of a critically ill child once said to me, Children are easy – until they get sick.

Most parents are familiar with the stress of having a sick child. Even if your child just has a bad cold you’ll probably know that she needs you far more when she is sick. When there is a chronic or even a life threatening illness, your stress as a parent can escalate off the scales. Nadine Raal has written an excellent book entitled Mending a Broken Heart. It’s about her child, Zack, who was born with a severe congenital cardiac defect. Zack and his parents have survived an ordeal that would bring most people to their knees. Not only does Nadine describe the medical challenges facing Zack and his doctors, but she also describes the process she went through when Zack was a baby and his life was hanging in the balance. All her energy went into caring for her sick child. Like many parents of critically ill children, the experience sometimes pushed her to her limits, but she reveals in her book how she managed to deal with the emotional and physical strain of the ordeal. So the book, whilst giving a window into the torment of Nadine’s experience, also provides inspiration and real help for parents who might be going through something similar.

The stress of having a sick child effects different parents in different ways. People often feel angry towards their sick children and this can make them feel really guilty. Of course it isn’t your child’s fault, but it’s human nature to look for someone to blame. Having a sick child can feel like an imposition, an inconvenience and it can be a massive drain on your personal, psychological and financial resources. It can also put substantial strain on the relationship between the parents because so much energy is poured into the sick child so there is almost nothing left to give to one another. The result: both parents feel neglected. There is also a real danger of blaming your partner – or even blaming yourself – for your child’s condition.

Having a sick child is hell, but challenges, like illness, can present you with an opportunity to discover strengths and resources in yourself that you might not otherwise have known about. I found a beautiful quote from Nadine Raal’s book that brings tears to my eyes every time I read it. She says,
I remind myself amidst all of this upheaval that this is the stuff of life. We are all on this crazy trip together…we have to give up our illusions. Notions such as the perfect marriage, perfect children, job security and perfect health never stand the pressure of everyday life and the relentless intrusion of reality. Perhaps one of the greatest illusions that we have is that we can somehow keep our children safe…to love our children the way we do is dangerous. In our love for our kids we take an enormous risk, the biggest risk of our lives: that is the risk of monumental loss.

If you are looking for ways to make a difference, perhaps consider helping sick children in Africa, many of who are HIV positive and fighting for their lives under tragic circumstances.

 

Jenny Perkel’s Survival Tips for Parents of Very Sick Children

• Take a short sanity break each day. Eg, coffee with a friend.
• Grab every opportunity to exercise and get outside in order to clear your head.
• Facilitate an honest, friendly and respectful relationship with your child’s medical team.
• Communicate clearly with the medical team. Tell them your fears and ask for help and reassurance when you need it.
• Accept all offers of food and practical help from friends and relatives. Ask directly if they don’t offer.
• Drop your standards for everything else (except partners and siblings) in your life while your child is sick. Try to put other matters on hold where you can. Take leave from work and excuse yourself from other commitments.
• Get support. Discuss your anxieties with someone who you trust. You may need help to get perspective and make difficult decisions.
• Try not to fight with your partner.
• Don’t feel you always have to take phone-calls from people outside of your close network. Don’t feel pressured to report to others on your child’s condition.
• Spend as much time as possible with your sick child. This will help you to feel connected to her and it will give her the courage she needs.
• Aim to survive this ordeal with your mental health and your relationship with your partner – and other children if you have them – intact.