Tola Dehinde
I am going to try and empathise with parents who have children living with sickle cell anaemia. The trauma that you experience as you watch your child writhing in pain, after doing your possible best for him or her, is unimaginable.
One day, I asked my mother about the psychological burden of caring for a daughter with sickle cell on her parents and siblings. Also, I requested other parents and siblings of those living with the disease to give me a better perspective on this subject.
The answer to my enquiry is that parents always want to protect their children and keep them safe. Apart from desiring the best for them, parents also have some expectations regarding the future of their children. As such, it can be particularly devastating to learn that one child is afflicted with an ailment as chronic as sickle cell anaemia.
By managing your own emotions during this time, you and your child can experience greater well-being. In addition to emotional strain, it will also demand a lot of time, energy and resources.
When a child is diagnosed with a chronic ailment, it is normal for parents to feel guilty and sad. Anger is also normal. You may feel angry toward your partner, the world at large or your child. These feelings are typical.
Addressing your child’s medical condition directly is the best way to move forward. Parents who took action and focused on the problem experienced lower levels of anxiety and depression than parents who denied or avoided the situation.
The parents I spoke to, talked about praying to God to take the pain away because sometimes the pain killers don’t work when the crisis gets worse. They also find it very distressing to observe their child in pain.
Seeing your child rolling around in pain is hard to bear, especially if there is nothing you can do physically to help. It is heart wrenching. A parent described the suddenness of the sickness as incomprehensible. A child could be playing with his mates one minute and the next minute, he is reeling in pain. But the pain disappears almost as soon as it comes.
Some parents recalled how everyone in the house would be sad throughout the period that a child living with the sickle cell disease remained sick. During this period, the entire household would be upset and depressed, as the child wants so much attention and he or she is given attention.
Parents also recalled how they kept rubbing ointment on the painful parts of the patient’s body and still, the pain did not subside.
I was reminded that anything could trigger the crisis: It could start with a cold or cough. The cries and screams of the afflicted child the in pain is not always easy for a parent to bear. I was told that such crises often disorient other members of the family. Some primary givers find it difficult to go about their normal duties or eat well because their thoughts are focused on the sick child. Nobody enjoys listening a child scream in pain.
The family would want to do things to please the sick child and all the siblings were taught to help her or him out. The child living with sickle cell is usually kept a special diet of vegetables, juices and fresh milk.
Sickle cell anaemia can also disrupt a child’s school regime because of frequent spells in hospitals. All family members would take turns to visit him or her when admitted into a hospital.
People living with sickle cell anaemia can get angry with other people around them when questions are asked. They can also snap at you. Please don’t take it personal, just bear with your child.
When in pain, anyone with sickle cell will not want to eat or drink. Perhaps you could give your child warm water, fresh milk, fresh fruit juice, corn flour, custard and pap or malt drink.
People with sickle cell do not like others to be made objects of sympathy, but they cannot do anything strenuous. Although they have an independent spirit, they need a lot of care.
However, do not forget the other children and give them a break from it all. Take them out and give them treats.
Parents can be stressed out or pushed to the limits of their endurance when caring for a sick child. A recent study found that parents experienced similar stressors, but mothers experienced higher stress levels than husbands, perhaps because they are the child’s primary caregiver.
The same study suggested that lack of control may be the most stressful aspect of caregiving — parents can feel a loss of control when, for example, they are unable to help their sick children feel better or they are uncertain about the future prognosis.
Build a support network that you can rely on to help ease your load as a parent, perhaps with other parents who have children living with the disease. Also, make out time to take care of yourself physically and mentally. Eating well, exercising and staying connected to hobbies or other interests can help keep stress in check. Don’t feel guilty to take some time for your own mental health. In the long run, doing so will help you and your child.
It is important to talk openly and honestly with your child about the illness in a way that he/she can understand. This helps build their trust in you. Talk about treatment before it happens. When you explain what is likely to happen, so the child can be prepared. Be honest about any possible pain or discomfort that he or she may experience, but reassure him or her by explaining that it won’t last long, and you will be there for support during the treatment.
It can be easy to let worries make you overprotect your child. This may result in the child missing out on activities that are essential for his or her healthy development, such as playing games with other children.
To all the parents out there doing a fantastic job or who did a fantastic job of looking after a child with sickle cell, I say well done. It has not been an easy road. May you continue to be strengthened.
If you would like to get in touch with me – t.dehinde@yahoo.co.uk and do check out my blog on: http://ift.tt/2fq28wH
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