Get back in there, tears!
This story was published on April 11th 2019. It was written by Thu (2018–2020 Cohort)
In 2002 in central Vietnam, a 3-day-old little boy named Thien Nhan was abandoned. Wild animals devoured part of his genitals and his right leg. His adoptive mother took him to many major hospitals in Thailand, Singapore and the US in the effort to recreate his penis. However, many leading doctors said that it was impossible since it was the procedure that they never performed before. Finally, luck smiled on him when the mother was referred to an Italian doctor who had researched into recreating penises for similar cases. After 4 operations and his mother’s non-stop efforts, now Thien Nhan can confidently go to the toilet at school as other friends. I read those words from a Thien Nhan’s mommy in her published diary on her son’s journey.
“Many godparents visited Thien Nhan in tears. Sometimes, I think why we have to cry?Me and my sons are mindful of saving. We save our tears. We seldomly cry when we are desperate because after crying we are extremely exhausted. After all, we still have to overcome that situation by ourselves. There is nobody suffering for us. In the end, crying makes you more painful…”
Recently, I had a chance to attend “Parenting on the margins” symposium organized by the University of Malta in Valletta (Malta) from 26 to 28 March 2019, which also left me with strong emotions. The symposium is the initiative of International Parenting Program (IPP) which gathers lecturers and students from seven European universities to promote parent-centered pedagogies and parent-focused professional engagements. This year’s topic strongly focused on the experience of marginalized parents.
The story of Thien Nhan and the symposium reminded me of “The 10-step-journey” project in Vietnam to raise awareness of congenital heart defect and my fragmented memories about parents in a Cardiovascular Center where I visited every month. All triggered me to write down something about them — parents of children with severe conditions and long-lasting illness. I used to feel helpless when talking to crying moms whose kids were hospitalized since one-month-old or even several days old due to congenital heart defect. I also met a young woman who always smiled despite her 2-year-old son kept being transferred from rehabilitation room to intensive care unit because of his unstable health condition after surgeries. When knowing that her little warrior could not fight in this battle anymore, she told me that she was grieving and missing him very much. However, she was also convinced that at least her son was no longer in pain and in better place. My friend once going with me in a visit cried desperately outside the rehabilitation room. And I think if a totally stranger like her feels so sad, then how can parents cope with it? After feeling guilty, sad and even angry, they still have to overcome everything by themselves. In this case, what can we do as an educator?
Conventionally, the information provided for parents and the children are typically disease-specific knowledge so that they can comply with medical treatment and healthcare professional advice. However, caring for children with chronic illness is never easy and simple. It requires parents to be well prepared financially, physically and mentally. In addition, as parents are usually the direct caregivers of their children, their distress and family functioning have both negative and positive effects on their kids. Therefore, education on self-management for parents is important. It equips patients and families with knowledge, confidence, and skills to take responsibility for daily decisions concerning their health, and to take effective control over managing the demands of chronic illness in ways that are flexible and relevant to their lives (Lorig, as cited by Savage, 2011).
However, I have to admit that the limited human and financial resources can be used as the excuses for not organizing such education programs in formal settings in Vietnam. Therefore, in my opinion, what we can do is to start from grassroot level of charitable group. For example, in my case, since our group members pay monthly visit to parents in the Cardiovascular Center, we can share self-management tips while having small talk to them. In the past, we only came to visit, listened to their circumstance and solaced them, but I hope this new approach will truly bring about changes in parents’ caregiving experience. Moreover, I also expect gradual changes in the conventional notion of “helping others”. For some people, helping others is about giving what they “think” others need. They come, take nice photos to post on social media and go. That why I used to see cups of free soup ending up in the bins of the hospital because the kids could not eat such kind of food.
I would like to quote sharing from one of my respected brothers as the closing for this post:
“Normally we will feel happy and proud of ourselves when we do something good to others. We think what we are doing go beyond our duties. However, if we see that we all connect to each other in some ways and we are always a part of the problems or a part of the solutions, we will never release ourselves from responsibilities for helping others”.
And here is the picture of the wall in Intensive Care Unit. These are messages from parents patiently waiting for their child to be transferred to rehabilitation room.
“Keep trying my sweetheart. Mommy loves you very much”
“Don’t worry my sweetheart!”
“I always pray for you to get well soon and come home with mommy and daddy. Keep trying, keep trying, keep trying. My sweetheart, keep trying. We love you very much. I’m so useless when I cannot do anything for you, I’m sorry my sweetheart. Mommy and daddy love you”
Reference
Savage, E., Beirne, P. V., Ni Chroinin, M., Duff, A., Fitzgerald, T., & Farrell, D. (2011). Self-management education for cystic fibrosis. Cochrane Database of Systematic Reviews. doi:10.1002/14651858.cd007641.pub2
