This story began here last week.
By morning after an exhausting night battling with my emotions, controlling my temper, crying, breathing… I felt calmer. Later that day, my son was transferred back to the parent hospital to my excitement. They thought he was now safe for the trip. I did not think he was any different from how he was the previous night though. He had been observed overnight and all was fine. We got to the parent hospital later that day. Sadly, no sooner had I arrived the main hospital, than another battle erupted about whether or not to restart a particular medication.
Before I could say Jack, the doctor smacked in my face the fact that if I wanted my way, I had to append my signature in my son’s notes to show that it was my idea to go against their advice. He had not even given me any advice regarding this medication. So how can I be going against an advice that I had not yet received? I told him to explain this advice and he did. He said he had assumed I knew already. After a thorough explanation I was not only convinced about the plan of action but fully in support of my child remaining on the medication in question.
It appeared to me that the hospital we got discharged from had something to do with this alien attitude towards my simple questions. I could not help but feel that somehow they had fed this back to his hospital. In all the years I had used this hospital I had never been asked to sign anything. I had been allowed to disagree, voice my opinions and concerns, ask questions and I had listened for answers which in most cases were satisfactory. I was used to being given thorough explanations about the plans of actions being made for my son before they were executed. During these explanations they accommodated my questions and clarified all my concerns.
I would not have understood my son’s illness as much as I did if not for the understanding and patient way things had been explained to me over the years by the same doctors. It really was a shock to me that this behaviour sprang up from out of blue after being transferred back from the hospital that day. It was too much of a coincidence.
I appreciate that it is both very difficult to listen and to be listened to when one communicates too emotionally. However, being the professionals, I believe they should have been trained on crisis management. It sometimes feels like parents risk being tagged by some of them as crazy as soon as their ideas about treating their kids are at cross purposes with those of these professionals.
It feels like parents are not allowed to be angry, upset or frustrated. Like they are not human beings expressing their feelings. It feels sometimes like opposing opinions held by parents become a recipe for their psychoanalysis by some healthcare professionals. This I think is not only unfair but unnecessary.
Many parents feel like they have to assume a demeanour of coolness, put up an act of calmness for this reason. Deep down, parents are sometimes not in agreement but for fear of being over-analysed by these professionals, they practice this nicely and expertly until it becomes second nature. Soon enough despite constant mental rehearsal, the shroud of coolness slips and their true feelings erupt. This does not make the parent crazy, it just makes them angry, frustrated, tired- but mostly human.
We see these feelings been accommodated from people -everyone else, and they are seen as normal forms of expression. Many are even proverbially allowed five minutes of madness but not parents with sick children. One will feel that having the added stress of caring for a chronically ill child will earn a parent even an extra minute of madness but rather it removes any such allowance. As a parent or carer, you can’t help but feel discriminated against every time you express those same feelings.
How can a question about the safety of your child be the bone of contention when the issue at hand is your simple inability to accept a treatment plan for your child? How do you go from not wanting something for your child to endangering them just because you dare to express your disagreement? What happened to making parents see sense? Where did the word crisis management disappear to? What happened to finding ways to calm the parent down? Perhaps discussing such issues later could be thought of as a solution?
Just so people know parents experience feelings of entrapment because they have disabled children and it’s totally unfair. In my case I had to have a chat with the member of staff to express these feelings and luckily got listened to and understood. I pointed out that parents are mostly misunderstood. I feel this misunderstanding is because most of the healthcare professionals are not in touch with our reality. It’s quite hard for human beings to empathize with a situation they know nothing about in terms of experience. Unfortunately as much as healthcare professionals feel that they deal with sick children on a daily basis, such proximity is not synonymous with experiencing dealing with the same sick children as their parent or carer.
The stresses we all go through as parents and carers on a daily basis, the emotions we confront, the strengths we have to access within ourselves to keep all together, the highs and lows are just a few of the things we deal with to steer our family ship and keep things on track. These are not what these healthcare professionals have to deal with in their own lives. Our children will always be a job to them while most of what constitutes their job… is our life.
However in the end we all- parents, carers, healthcare professionals, staff and so on, should have the interests of the child at heart at all times. Let the focus never shift. Let us ignore our anger, resentments, egos and ideas about what is right and wrong and focus only on what is best for the child. In the end it is not a competition or battle to prove who cares the most but it should be a partnership that is expressed in the best interest of the child.
In conclusion I must state that after my chat I reappraised my idea about the healthcare professionals not been in touch with our realities as parents and carers. Like the nurse said, some of the health care professionals do go home to their “disabled” children too. Just because they don’t say it does not make it less likely. However since a service is being rendered there are standards set that should not only be met but also adhered to. Therefore the stands the healthcare professionals have to take regarding various issues revolving around caring for our children may not necessarily express their own personal sentiments as individuals. It makes sense not to lump them into a group of uncaring people or else run the risk of judging them. That will also be unfair to them.
Thank you for reading.
Photo credit Pixabay.
You may also like other write ups like these.They make up the series I fondly call The Hospital life