‘The little “Ugly Duckling” of this story, takes her mother on an incredible spiritual journey. Bree is a teacher of Swan.’
Wendy Gilker’s book is the true story of her life with her daughter, Bree, who was born with Wolf Hirschhorn Syndrome. The same syndrome as my son, James, which is what drew me to read her book. Any parent of a child with a disability will understand the need and interest we have to read and find out as much information as we can about our children and their future prognosis.
Wendy’s first reference to Bree in the preface of her book was to speak of her ‘brain injured’ daughter. Whilst we can debate whether this is or isn’t factually correct, it is not a term that sits comfortably with me. The dislike of the term is purely my personal opinion and one I will come back to as this terminology is addressed later on in the book.
Chapter one gives us a brief background to Wendy and her husband Walter’s life, and how they met in Canada where they were both born. After marrying they enjoyed travelling in Europe and led what Wendy describes as “a carefree and wonderful lifestyle.” Four years later, aged 28, Wendy was ready to start a family. It appears Walter was unenthusiastic from the start but he agreed and Wendy describes him throughout her pregnancy as being “an interested onlooker” whilst she prepared wholeheartedly for her baby’s arrival by immersing herself in knitting, reading and preparing their home.
A Traumatic Birth
Wendy goes into great detail about the trauma surrounding Bree’s birth. Due to medical complications, she was advised to have an emergency caesarean section. After Bree’s arrival it then took medical staff 20 minutes to get her to breathe, eventually breaking the news to Walter that “something is not right with your daughter.”
Throughout Wendy’s time in hospital, both preceding and following Bree’s birth, Wendy felt ill informed about what was happening with her baby and spoke of “feeling like a piece of meat” herself. She felt staff were uncommunicative and it was down to Walter, 2 days later when Wendy had recovered enough from the exhaustion and pain she was in following the birth, to tell her that the doctors wanted to transfer Bree to another hospital. It was felt that due to her small size and low birthweight that she needed more specialised care. Wendy only saw Bree for a few minutes before she was taken away and at this point, she was still unaware of how serious Bree’s condition was.
Given Wendy’s experience in hospital during and after Bree’s birth, the lack of information she was given and the fact that she was not consulted or included in the decision making, it is not surprising that Wendy developed a deep distrust and lack of faith in the medical profession and traditional medicine. As we see throughout this story, this impacts hugely on the choices Wendy makes in hers and Bree’s future lives, and indeed she goes to quite considerable lengths to find alternative treatments and therapies to help Bree.
Wendy’s story continues after she and Walter took Bree home. Sadly, they had a negative response to Bree’s condition from both hers and Walters families. Other than from her own mother and occasionally her mother-in-law, Wendy had little family support. Wendy talks of her and Walter making “emotional adjustments” to their new life with Bree and balancing this with their work commitments.
Early Diagnosis
Bree was diagnosed with Wolf Hirschhorn Syndrome quite early at only 2 months old, and that first year was filled with one medical appointment after another. Family life was busy and later that year Bree was baptised. At approximately 18 months old Bree began to have seizures and a harrowing stay in hospital did little to restore Wendy’s faith in the medical profession.
Around this time Wendy’s mother sent her an article about a stimulation program that another family were following at home. The following week she received another article from Walter’s grandmother about another family who were also following the same program and so Wendy felt strongly that she was “being guided in this direction.” She contacted the Institute for Achievement of Human Potential in Philladelphia who were running the program. The institute sent Wendy a book list and she set about reading as much as she could about ways to ‘heal’ Bree including a book called ‘What to do about your brain injured child’ by Glenn Domain.
This seems an opportune time to return to that term ‘Brain Injured’. I have not read Glenn Domains book but it appears that he explains that his use of the generic term ‘Brain Injured’ refers to all types of deficiency including what he calls ‘mental retardation.’ Personally, I find this to be another term that is outdated and that many people including myself find offensive. Again, my personal opinion, but not a word I would ever choose to use to describe my son.
Wendy felt that in the program run by the Institute she had found “what she was looking for” and went to considerable lengths to get Bree accepted on the program. It was a huge undertaking requiring much of Wendy’s time. She also rallied a group of volunteers to support her in carrying out the program. It seems that Walter’s commitment to the program was sporadic and whilst he worked hard to finance this, he was not fully on board with carrying out the program himself. It was also a huge financial commitment meaning that Walter often worked away for long periods of time to fund this but they were still so poor that at times it resulted in them selling household items and undoubtedly contributed to a great deal of strain within Wendy and Walters relationship. Wendy writes about this a lot within the next few chapters of her book, this and finding her own spirituality. The program ran for two and a half years in total.
Macrobiotics
There is no doubting that Wendy is a mother who is totally committed to her daughter and she cannot be criticised for that. When she discovered anything at all that she felt could help Bree, particularly anything that may prove an alternative to having to rely on traditional drugs to treat Bree’s condition, she threw her self into it wholeheartedly. When Wendy found out from another family about macrobiotic diets she did just that. Feeling this could benefit Bree she undertook a totally new way of eating and cooking, not only for Bree but herself too. Again, Walter was not a willing participant. So committed to this was Wendy that years later she was to qualify herself as a macrobiotics teacher.
The macrobiotic diet is one that bases itself on the use of wholegrains, fruits, vegetables and bean products. More than that though macrobiotics is about lifestyle choices and the way in which food is prepared and cooked. Whilst not all medical professionals would advocate this, others feel that a macrobiotic diet may have therapeutic benefits for some people who have chronic illness.
Wendy maintained the macrobiotic way of life for herself and Bree and attributes it to having been able to wean Bree off her seizure medications. It is clear that Wendy chose the view of not “fighting disease with chemicals” and she sought other alternatives along their journey, exploring the benefits of crystals, dowsing and Feng Shui.
When Bree was approximately 11 years old it comes as no great surprise reading in between the lines of Wendy’s book that hers and Walters relationship broke down and they went their separate ways. But whatever challenges faced Wendy, and there were many, she remained steadfast in her absolute commitment to give her daughter the happiest and healthiest life she could. She had many battles with the education dept to get the required support for Bree but it has to be said that Wendy is not a woman who takes no for an answer.
By the end of Wendy’s book in May 2016, Bree had reached the grand age of 36. Amazing when she was given the prognosis of not living beyond 5 years. Sadly, Bree passed away just a few months later in January 2017. Wendy has gone on to write ‘Bree’s Way Cookbook’ and a child’s book called ‘A Gift from Gracious.’
As I read Wendy’s book, it was natural I guess that some of her experiences resonated with me, starting from Bree’s birth and following her childhood and medical complications, the struggles with day-to-day life, the impact raising a child with such profound challenges has on other relationships and our battles with education authorities. I could go on. Would I have done things the same way as Wendy, no not necessarily, but then we are two different people. What I’d like to think we have in common is our shared desire to give our children the very best life can offer them, to keep them safe, to keep them healthy in the best way we know how but most of all to cherish them with all our heart and love them for who they are.
