It is never easy to accept that your child will always be unwell, worse still that they may not live another year. The concern before the diagnosis, the fear and uncertainty that comes with the diagnosis, the new world of constantly listening to medical jargon, support groups, tests and scans, and medications you can barely pronounce. The stress and strain on your mental health, occasionally forgetting you have other children who also require your attention, constant fights with your partner, blaming yourself for not paying more attention to what you thought was just a sniffle but turned out to be the beginning of your worst nightmare… and then there is the feeling of resenting your child for falling sick. Resenting your child for disrupting the dynamics of a perfect family, siblings resenting the sick child for taking up all the family’s resources so much so that there is barely ever enough left for lunch.
IS IT JUST ME?
Dear parents, these feelings are not uncommon, and you are not alone. As parents the instinct is to protect your children and it is not uncommon to feel some guilt and pain when you feel powerless. Whether it is a terminal illness like cancer or some other illness your child must manage for the rest of their lives, like HIV/AIDS, what you feel is very real and should not be ignored.
You may not be able to admit it publicly for fear of being judged with statements like ‘what kind of parent blames their child for being sick?’ but it is important to address them rather than ignore because they can worsen parental anxiety and depression, disrupt your coping mechanism, and impair rational decision making. As much as you can, recognize and be willing to accept what you feel, find a trusted person to listen. Identify areas you can exert some control and do what you can, as much as you can and although there is the issue of ambivalence about the future, be willing to acknowledge the unknown, learn to let go, and focus of the positive.
WHAT DO I DO NOW?
It is easier said than done, but you have to try. Sometimes parents just need a sounding board because it can be hard to maintain clarity of thought enough to make decisions in line with their true values. Talk therapy will come in handy here for parents, siblings, and other family members. These children need extra care and often the mother has to be the one to let go of her career and everything else that defines her to care for that child. Although she loves that child, she may sometimes resent him or her because of the price she has to pay to care for them.
Other things a parent may feel include:
- The incorrect notion that it was your fault.
- The sense that you could have done something more to protect your child.
- ‘It should have been me’. Feeling that you should have been the sick one so your child would not have to go through so much pain.
- The guilt of ‘not being sad enough’ or ‘crying too much’.
- The perception of being punished for past sins.
- The guilt of being relieved after the passing of a child with terminal illness.
- The guilt of making plans with your other children and family members.
YOU ARE DOING YOUR BEST.
Acknowledging your guilt and anger does not make you a terrible person and it does not mean you are letting go of your child. Permit yourself to analyse your guilt, why exactly do you feel guilty? Do you feel ashamed? Sometimes parents go from feelings of guilt to being ashamed and this may lead to self-destructive behaviours. Sometimes you blame others to take the focus off you and to reduce the pain you feel. Blame creates the illusion that the situation could have somehow been controlled but this is not always the case.
Parents may also struggle with balancing everything all the time; however it is advisable to learn to let go. Set smaller, more manageable goals that are realistic. Letting go, focusing on more immediate goals, and carefully identifying the needs for the near future will help take away some of the pressure. Letting go means different things to different people, for one parent it may mean permitting their partner to pick up the groceries while they take a nap, for another it may mean having a long bath with a glass of wine, for yet another it may mean forgiving themselves or others for mistakes.
You may also consider visiting a mental health professional to help process the feelings of guilt and work through difficult emotions.
Dr Omowunmi H. Thanni is a physician with a medical degree from Olabisi Onabanjo University Ago-Iwoye (Mb.ChB. Ogun). She is an Infant and Childhood Mental Health enthusiast who is passionate about supporting children with mental health concerns.
She is also an Early Childcare practitioner with experience observing children dealing with grief, the various psychosocial presentations, and the impact on their families. She is also a Child and Family Volunteer who serves as a healthy support system for children and families who have experienced the loss of one or both parents to terminal illnesses.
She is devoted to debunking cultural myths surrounding childhood mental health and enlightening the community on proper prevention and intervention strategies.