Parents Living With Retinoblastoma
Parents describe the day of their child’s cancer diagnosis as the day their world fell apart.
The day they were thrust onto a terrifying roller coaster ride, with no light on the path ahead, and no emergency stop cord.
Some parents cope well with the stress exerted by their child’s diagnosis and treatment. They reach within themselves to find hidden strength and skills to navigate the experience.
They recognize the implications such a trauma has for the family, adjusting expectations and parenting styles according to their fluctuating needs.
This is not the average experience though. Most families suffer frayed nerves and short tempers, as well as periods of real calm. Most do survive the roller coaster ride together though, and frequently emerge to find the family unit stronger and more understanding of one another.
Visually impaired parents may be especially vulnerable to stress. Care-taking tasks such as looking after a central line may be more difficult. Relying on others for help with medical care or transport can cause feelings of inadequacy and failure.
There are many things you can do to reduce your stress and boost your coping resources at this time. As an individual and a couple, you can take control of your feelings and turn them into positive energy to fight your child’s cancer.
Friends and relatives may feel helpless. They may avoid contacting you because they don’t know what to say or worry they are bothering you. However, they may be huge sources of support, if you stay in touch and explain how they can help.
You are likely to experience a tremendous outpouring of love and support from people around you – friends and strangers alike. Learn to accept the help offered as it is likely to bring you much positive energy, hope and peace.
From mind-numbing shock and denial, through guilt and fear to renewed hope for the future, you will ride a roller coaster of emotions, but you do not have to ride it alone.
Anger is a universal response to retinoblastoma, but frayed tempers can be especially damaging in times of crisis. Be proactive in reducing your stress.
When symptoms of stress do not go away, become worse, or interfere with daily life, they may be a sign of developing depression or post traumatic stress.
Looking after your own physical and mental health is very important. You are your child’s best advocate, and your own wellbeing is vital throughout treatment.
Caring for a child with cancer can greatly strain relationships. There are many things you can do to support one another as you move forward with your child.
Notifying family and friends of your child’s cancer is one of the first challenges you will face after diagnosis. Thinking about how to do this can limit your stress.
There are several ways you can update people about your child’s progress. Knowing the latest news will enable them to give valuable support and friendship.
Self-sustained heroism is an unreasonable expectation for any individual or family under stress. Learning to gracefully accept help is essential.