A letter reaches out to strangers AUTHOR Tania Beekmans Tania Beekmans is a Social Worker who lives and works in New Zealand. She can be contacted c/o taniabeekmans@xtra.co.nz This paper describes the use of a letter, crafted from the words of the parents of a child with a serious physical health condition, to invite passers-by to smile and engage with their child rather than stare. Keywords: letters, children, physical health, cards
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I have been engaged with Sam, Kendra and their daughter Dreia who is two years old. Dreia was born prematurely at 24 weeks weighing 745 grams. Her survival was in jeopardy for some time. She survived but required a constant supply of oxygen to help develop her lungs and, by the time I met her family, she had been admitted to hospital 21 times. During one of these admissions, her pneumonia turned into bronchiectasis which is a very serious respiratory illness. She was one of the youngest children in Auckland with this diagnosis and her asthma was a further pulmonary complication. Dreia needed to continue to be on oxygen and this was a difficult situation for her young parents to cope with; however they did so well and without complaint. The oxygen machine used power 24 hours a day to run and this impacted hugely on their finances. Neither parents could maintain regular employment as caring for Dreia and her admissions to hospital took up so much of their time. My role was to support the family with their well-being, health and education. Driea’s physical health needs were being well taken care of by a dedicated team of health professionals. Family Start, the organisation in which I work, delivers a program called Ahuru Mowai Born to Learn which attempts to address all aspects of a child’s development. Through observations we discovered that Dreia was doing very well in most areas but her social-emotional development was a little behind where it should be. Kendra and Sam were worried about this and put it down to people staring at Dreia and not smiling. Kendra and Sam talked about how they felt invidiously judged for their two-year-old daughter’s condition. Wherever they went, Dreia’s physical condition required her to be attached through a nasal tube to a portable oxygen cylinder which was carried by either parent. People would come up to them when they were out and accusingly demand to know what they ‘had done to’ Dreia. Kendra felt she needed to justify herself by telling people she didn’t smoke or drink and that her daughter’s prematurity was caused by her going into spontaneous labour rather than anything that she could control. Kendra and Sam found it such an ordeal just to take Dreia out shopping that they had become virtual prisoners in their own home.
To Whom It May Concern, My name is Tania Beekmans, a Social Worker at ATWC Family Start. I am writing on behalf of Kendra and Sam and their daughter Driea. You might be interested to know that Driea was born prematurely at 24 weeks weighing only 745 grams. The medical opinion is that it was a spontaneous labour as Kendra neither drank or smoked during the pregnancy. And also I wanted you to know that she and Driea’s dad, Sam, couldn’t be a more loving and committed couple. You may find it hard to believe as I do that in Driea’s short life she has had to be admitted to hospital on 21 occasions and is under the care of the Paediatric Respiratory Team at the Starship Children’s Hospital. It was during a prolonged stay in hospital where her pneumonia turned into a very serious respiratory illness called bronchiectasis (pronounced bron-key-eck-ta-sis). In addition to this causing wheezing, she also has asthma which does the same. Can you imagine what it is like for Kendra and Sam to have to do physiotherapy with their beloved baby daughter three times a day for one hour if she is to survive? And how painful it must be for them to see that their life-saving treatment causes Driea to vomit so understandably she fights the treatment? But her parents are aware that this is vital if she is to lead a normal life and say play sports when she is older. Of course, she is too young to understand that her mum and dad are saving her life. She only knows how uncomfortable And bothersome such a treatment is three times a day. Can you imagine what it must be like for Kendra and Sam to appear to their beloved daughter to be causing her pain or doing her harm? In addition, Driea requires oxygen 24 hours a day which, as you can imagine, is a great burden on her parents’ lives. Most two-year-olds do their own breathing as you well know. Thanks to such wonderful and caring parents, Driea is doing very well developmentally. If you would like to help her thrive, can I recommend to you that you smile and talk to her even if you feel like staring. She is like any other child, except she requires oxygen, and can walk, talk, dance, smile and laugh. However, it is difficult, as you can imagine, for her to explore her world attached to an oxygen cylinder. Her parents have to encourage her to walk in order to strengthen her lungs. This may mean with parental supervision she has to be left to cry to strengthen her lungs.
At the time, I was studying at Unitec where David Epston was giving a lecture. I approached David after he had spoken about narrative letters he had used to reach out to people. I thought these letters sounded inspirational and wondered if they could be useful for Dreia and her family. I talked with Kendra and Sam about this possibility and they were very keen for it to happen.
Kendra and Sam have engaged my services (ATWC Family Start) and all appropriate medical services required. If you ever wanted to meet two angelic people, they are Kendra and Sam. Can you show them your respect for what they are doing by smiling at Driea? I thank you so much for your consideration. I only wish you knew Kendra and Sam as well as I do.
One day I had taken Kendra and Driea to an appointment and we decided to stop in at McDonalds and start talking about the content for the letter. It was during this visit that I saw firsthand how people stopped in their tracks and stared at Dreia, and then turned towards Kendra with looks of disgust. I don’t think I had fully comprehended how bad it actually was until this point.
Yours sincerely, Tania Beekmans ATWC Family Start
The main hope that Kendra had for a letter that she could give to others was to convey that Dreia needed the sort of positive attention from people that other children her age receive. The letter, which David Epston helped us to write, talks about the dedication that Sam and Kendra show their beloved daughter daily in order for her to survive. It is such a beautiful letter that even to this day I still feel teary when I read it knowing how much it meant to the family.
Following on from the letter, I spoke to a colleague I worked with from Auckland Women’s Centre and she offered me the use of her badge-making machine. We came up with some badges for Dreia to wear that said things like, ‘Be the first to smile’, ‘Oxygen helps my lungs grow – your smile will help me thrive’, and also some badges for Kendra and Sam that said ‘Our daughter is a miracle and your smile fills our heart as well as hers’. I was working for ATWC Family Start at the time and their print company offered to print messages on postcard and business card size cards with a short version on Dreia’s situation written in a child’s voice about why Driea had to use oxygen.
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When Sam and Kendra started giving out the letters to people, they were overwhelmed with the response. Some people, after staring and being given the letter would come up to them and apologise and ask if there was anything they could do. Others just looked away embarrassed by their previous judgements. Sam said he preferred wearing the badges and just felt better having the knowledge that he had the letter with him. Kendra said she felt empowered by giving people the letter rather than becoming defensive as they continued to stare. Last I heard they had distributed 150 letters and felt at ease, as a consequence, to go to any public place accompanied by Dreia and her portable oxygen cylinder. When I asked Kendra for a service user attestation for registration to the Social Work Registration Board, she wrote that ‘Tania was able help us be more comfortable around people that judge us, by making the letters and badges that explained very simply about our daughter’s condition. This has given us so much confidence to stand tall when people judge’. Kendra said that, by reading the letter, it made her and Sam realise what a good job they were doing with their daughter and that they were doing the best they could under really difficult circumstances. I caught up with Kendra, Sam and Driea recently, Dreia is now five years old and has started primary school. She is doing remarkably well considering the health needs she still has. Kendra said that in her first six months of school she was only there 27 days. Kendra is studying an Early Childhood degree and Sam is
working and considering studying Social Work in the future. They are managing to get on with life despite Driea’s ongoing health problems and show a strong resilience that they role model to Driea. Kendra said when Driea first started her current school her nana took along the letter and the cards to show the school as they explained Driea’s needs. Driea copes well with most of school life however sometimes comes home and says the kids are so fast at school and she is unable to keep up. Kendra feels the cards will continue to benefit Driea to give out as she grows up and is better able to describe her condition in her own words. Kendra said that she also gave the letter to family members who hadn’t understood the full magnitude of their situation and they now feel so much more supported by their wider family. Apparently, Driea’s nana also used the letter, cards and badges when she is out with Driea and found them hugely beneficial. Significantly, Kendra said that once she was feeling stronger and not being as affected by others, she started to see others who were in the same situation. She described a time when she saw a young mum with a child who had a gastric tube in his nose. Kendra went up to her and showed her the letter, she said the mum sat there and cried seeing that someone else understood her plight. Kendra said that she felt she was able to support others and gave a few copies of the letter to others to replicate the concept for their own situation. Kendra also talked to these families about the supports that are available to them.
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