To find out more about the book
or to contact the author, please visit:
www.vividpublishing.com.au/amumsperspective
Copyright © 2016 Margaret Cox
ISBN 978-1-925590-25-8 (eBook)
Published by Vivid Publishing
P.O. Box 948, Fremantle Western Australia 6959
www.vividpublishing.com.au
eBook conversion and distribution by Fontaine Publishing Group, Australia
www.fontaine.com.au
Subjects include: Sick children--Mothers--Families.
Table of Contents
Introduction
Foreword
Where it all Began
Story One: Margaret’s Journey
My Battle so Far
Story Two: Matthew’s Journey
Matthews Tumultuous Times
Story Three: Jacob’s Journey
Jacobs Miracle Journey With Epilepsy
Summing it all Up
Bibliography
Introduction
My husband Andrew and I met on the Gold Coast in July 1995 and married almost two years later in May 1997. We were extremely happy and worked together with my sister and brother in law helping run an Avis agency in Mackay until having our first boy Daniel in June 2002 and subsequently twin boys Matthew and Jacob in July 2004. All three boys were delivered naturally, born healthy and without major complication throughout my pregnancy. We conceived all of our beautiful boys with the assistance of IVF after being unable to conceive children naturally. Our entire world was rocked however when Matthew was diagnosed with Autism and Global Development Delay in December 2008 at 4.5 years of age. His diagnosis was to be “upgraded” to intellectual impairment in 2011 because despite our proactive attitude to helping Matthew with a spade of different therapies, he could only minimally function in a special school environment. In October 2010 I myself was diagnosed with stage 4 breast cancer and Jacob was diagnosed with epilepsy in April 2011. Our seemingly once normal family had been torn to ribbons, with no known genetic family history for any of these diseases. With countless, countless hours of appointments with Doctors, Naturopaths, Dieticians, Paediatricians, Geneticists and many other specialists under my belt, some extremely helpful, others offering little to no help, Andrew and I have tried to piece together all parts of the puzzle.
Over the years I have discovered there is a lot of misinformation on the internet but there is also a lot of very helpful information as well. It is clear to me now that most things you are questioning have two very different opinions and this has confused me beyond belief but we have also found some answers in our search particular through our own trial and error. I have what I jokingly refer to in my own head as a master’s degree in Google. It has taken me as much time to achieve as a normal master’s degree without the qualifications, accolades or credibility at completion. Many people from all walks of life have told me to stay off the internet but I know conclusively that this curiosity has enabled me to improve the quality of life of my entire family. It is easy for anyone to offer advice like this because they are not living your life, they didn’t watch their own perfectly normal children regress developmentally before their eyes otherwise I am certain they would have gone down the same track desperate for some sort of answer. You only have to speak to anyone who has gone through anything like this to know that they are fighting the same battle as you, searching frantically for a glimmer of hope. I have had conversations in waiting rooms, taxi rides, support groups, supermarkets, with teachers, complete strangers, friends, acquaintances and family members and have found most people to be very sympathetic and encouraging. Negativity has never had any place in this battle we have had, even when people have been less than helpful I have shook it off because I have always known deep down that I was on the right track.
Had I not had such a loving, supportive husband and family, I may have given up the ghost. Maybe I would not be here today to tell our story but one thing I know for sure our journey would have been far more difficult. This is one thing that saddens me more than anything, the fact that a lot of people do not have that luxury of feeling supported and loved. The reality is that a lot of families have also to deal with other family dilemmas such as separation, divorce, financial ruin to name a few. All I can tell you is that there are so many people in Australia and worldwide who are spending their hard earned savings to try and help the children that society appears to have all but given up on. We are one of those families, the money we have spent I daren’t not think about and quite honestly don’t care about, because we are one of the lucky ones who have found some answers at least for our own family.
I feel quite strongly about the fact that the word “cure” has been bandied around a little too liberally with some of the information I have read, because one of the most valuable lessons I have learnt in my own search for answers is that just because one thing helps one person it doesn’t necessarily mean it will help another. That to me goes for most any therapy or treatment whether it is natural or medical. Our bodies are uniquely individual and although there will be common denominators there is no guarantees in life. Quite obviously a cure does not exist unless it can rid any patient completely of the symptoms of a disease in any given circumstance. This book is maybe a little different to others marketed lately, in that I will not be telling you eat this, drink that and you will be cured of a certain disease and particularly not all diseases. Not that I don’t think some of those precise books have very valuable information and I believe strongly that they are almost always written with very good intention. The author in most situations has had a remarkable life changing story and quite obviously wants to share their experience in the hope of helping other people. This was certainly my goal when I decided to put our journey into words.
I have spent countless hours reading forums and blogs from a huge number of different sources to gain a better quality of life for my family and even if I gain one tiny snippet of information that has helped any of us I know it has been worth it. From experience I also know that some treatments that seem to help a lot of people have been nothing more than a waste of money for us; I don’t regret trying them but our bodies are so individual and complex that you just can’t logically expect the same thing to work for everybody, we were just not built that way. The thing that really concerns me is the sometimes ferocious attacks on individuals online and in person for just seemingly having a different opinion to others on health issues, especially in a time where diseases are on the rise and you would assume that the most effective way to get positive growth would be for the greatest medical minds to work together and collaborate ideas. That has been far from our experience though, to us there seems to be a distinct line down the middle at this point in time where professionals are very quick to criticise other medical professionals for looking outside the box to try and help their patients more. Regardless of this fact though, the movement is happening, parents are pushing doctors for answers and miraculously they are finding them sometimes where you least expect it.
Obviously science based evidence should be first and foremost to healing particularly with life threatening diseases and we personally have always explored that avenue first in every health issue we have faced. Sadly though people have to search for other answers to problems that are not responding to “standard” medical treatment, should those people be crucified for that? We are one of those families; we would have honestly tried most anything that would not have a detrimental effect on our health. To me food and supplementation to correct vitamin and mineral deficiencies certainly falls into that category, and anyone who has seen Matthew or Jacob or even myself at their worst and ridicules us for that can keep their opinion to themselves. In saying that I have absolutely no belief that oncologists or paediatricians study for years and years to help people and then have the “magical” answer to curing all disease and just don’t want to share it with anyone. Greed, money and corruption play a huge role in modern society, I think everyone knows that, but the suggestion that the majority of medical professionals are DELIBERATELY involved in that corruption is nothing short of ridiculous as far as I’m concerned.
Chronic diseases NEED a multifaceted approach and complementary treatments are there for that reason to complement medical treatment, so any individual or body of people that advise you to discount the medical advice from your doctor I would steer a very wide path from. I personally have little understanding also of the reason people seem to be more inclined to go down the natural OR the medical path, to me that is like taking the field for a grand final without your star halfback, why wouldn’t you do both? The health professionals we have seen over the years for Matthew have been on the whole extremely empathetic to our situation but have been able to provide little help to our extremely complicated circumstances. Like any profession, are there some medical professionals that are better at their job than others? Of course there are, but we learned very early in the piece that we were dealing with three incurable diseases so my expectation for any cure was certainly not great. To me, there is no one answer or potion that will “fix” everyone, in every situation, and for me or anyone else to suggest there is, is an insult to most people’s intelligence. Sometimes I turn on the television and get quite cranky when a study “proves” that alternative treatments are not beneficial, I have to wonder who is funding these studies and also who is getting researched because it has honestly intrigued me over the years why my family has not been more scrutinised.
I come from a family of four girls of which three of us have been diagnosed with breast cancer since 2008; sadly my eldest sister lost her battle in 2013. Even oncology nurses have said to me with having three women out of four siblings in my family with breast cancer, “You would have had some testing performed on you”. “Not really, basically just the BRAC1 and BRAC2 gene testing”, has always sadly been my reply. I would have been more than willing to be a guinea pig for more medical research but even though I have insinuated we would partake in further testing the conversation has never been elaborated on. If there is any corruption involved I personally believe the corruption goes a lot deeper than doctors or medical professionals themselves. I genuinely think the vast majority of the people we have seen have tried to help us as best they could with the information and treatments currently available at that time which as we all know with autism is little to none from a medical capacity. Unfortunately for health sufferers, because let’s face it, the patients are the ones suffering, there seems to be a widening gap between orthodox and complementary treatments from certain bodies. The timing for this is my opinion, could not be worse, because I am sure that whatever side of the fence you sit on, you would have to agree that the world is a FAR more toxic and polluted place than it was 30-40 years ago. Certainly for us, the combination of both treatment approaches has been beneficial and profound in some aspects. I think though that a lot of the bad rap that some alternative treatments are receiving is misdirected towards the practitioners themselves, which in some instances do years of study to attain qualifications.
I would be more inclined to lay blame on the “experts” who are attempting to peddle products onto people having no formal training or knowledge of nutrition or biology in any aptitude but have paid their $50 wholesale membership fee to have the ability to then on sell these products to unsuspecting victims. Haven’t I met a couple of them over the years, don’t get me wrong I don’t mind people suggesting a product to me that they think may help me, that I can do my own research on without being hassled, because most people’s intentions are admirable. Some of them though are money makers, pure and simple, the people that especially come to mind are the ones when whilst going through everything I am going through, when I have told them quite nicely that I do not want to sit at a 3 hour seminar to “gain knowledge” (their words) about a product that we have tried years ago, have got quite belligerent and not even bothered to reply to my message. This person had no idea I was actually going through chemotherapy at the time, but that is simply because they were virtually complete strangers, who got my details off a friend and contacted me via social media. A lot of them are obviously pyramid schemes that rely on selling things that they have no knowledge of, to people that are usually desperate. These people to me are nothing short of dangerous, I as a cancer patient need to speak to my oncologist about anything I take and I am well aware of that fact, but some people possibly are far too trusting.
There is such a wealth of knowledge out there though, some just from personal experience that is itching to be embraced and shared if all health professionals could only work together in a closer capacity. Let’s face it, couldn’t we mask this as “growth” or “progression”, instead of taking two steps backward. To quote one of my favourite childhood actors Robin Williams, out of one of my favourite adult movies, Patch Adams:
“You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.”
I don’t profess to have a cure for cancer, autism or epilepsy. In fact I will be the first to admit I have very limited understanding of any of these complex diseases but I have lived them, each and every one of them for many years and I do have a story to tell. A story that if my telling it will benefit even one person, I feel our journey has not been a waste. Our story is sadly not overly unique there are so many families battling every day with challenges struggling to undertake the simplest tasks that most other people take for granted. The most important point that I wanted to get across when I decided to write this book is that superior food and supplementation to correct vitamin and mineral deficiencies if necessary DOES make a difference in managing and living a better quality of life with chronic illness, it has made an abundance of difference in our family and don’t believe anyone that tells you that what you put in your mouth is not extremely important to every aspect of your life. We have found that when we eat as much good quality food as close as possible to nature that our body and mind thanks us extensively for it in many different ways and alleviates many symptoms that some people seem to struggle away unnecessarily with for life.
If this story upsets or offends anyone I apologise in advance because it is not my intention to denigrate or discredit any person or profession and I certainly hope that no part of this book comes across that way. Quite simply I wanted this to be a very honest account of the last few years of our life in the hope that others reading this may find some links to some of the things they are trying, have tried or are about to try. This is a story of agony, heartbreak and lost time but I also believe it is a story of hope, inspiration and courage and I hope you enjoy it.
Foreword
By Andrew Cox, husband, father, carer, cleaner and head chef
When Margaret asked me to write the foreword for this book my first thought was how unqualified I was to do so. Then after reading the book I realised the importance of the series of events that had happened in our lives and the message she was attempting to portray to the general public just from life experience alone, rather than from a medical perspective. I have fought Margaret over implementing a lot of different diets over the years but didn’t realise the relevance probably until they started to resolve some of my own physical and mental symptoms. The best examples of these symptoms that have improved with me personally are depression, anxiety, heartburn, psoriasis, back and knee pain. The changes in our boy’s behaviour and medical conditions have been amazing to witness. For this reason alone I now feel like I am more qualified than anybody to write this foreword. Plenty of medical professionals have told us certain things aren’t relevant, but when you live with what we have lived with every day we know they are.
Matthew has been Margaret’s greatest battle but she has been relentless in her quest for answers, and I know particularly with her stubborn attitude that she will never give up on trying to help him live a better life. Orthodox medical professionals have given up on Matthew and just want to prescribe him with brain numbing medications for his condition; Margaret has researched the side effects of some of these medications and has a very strong will to try everything else first. Margaret wants to try and help everyone she meets with their physical and mental symptoms after what we have seen with our own family and strives to study nutrition formally to reach more people. Margaret’s positive attitude through her cancer treatment over the last six years has inspired me and I think a lot of our family and friends. In some situations she has shocked medical professionals at her level of positivity when going through the most enduringly difficult scenarios. I have never met anyone or think I would meet anyone again who has gone through what she has with the same attitude and demeanour. Psychics and mediums have expressed that she has an amazing aura and when she was placed in intensive care this year she was told by the emergency doctor that she had an incredible aura when he walked in the room and of all the patients he has treated in his 7 years he has never seen anyone so positive. If you get the chance to meet her, I think you will know what they mean.
Margaret has given us as a family unit a better quality of life. Throughout Margaret’s treatments she has been told by oncologists that she has tolerated everything they have thrown at her and that she has had more than double the mileage of most patients with the chemotherapy she was on. I unequivocally know firsthand from living with her and witnessing what she has done that is largely because of how she has changed her lifestyle since her diagnosis. With our son Jacob, we were in an extremely bad situation where medication was not effective and we were facing the scenario of permanent brain damage if the seizures were not ceased, it has been an absolute godsend what nutrition has done for him. Matthew, even though we have still not got any speech, is so much more pleasant to be around on a better diet and it has become very obvious to me too how negatively certain foods affect him, most importantly we are able to lead a more normal life as a family. Daniel and I have led generally healthier lives with proper nutrition which has lessened some symptoms for both of us.
One thing I can guarantee as you read this book is that Margaret has been very open and honest about our accounts and that results have not been exaggerated, in fact the results we have achieved have been very obvious and dramatic. This book primarily gives everyone, no matter their situation, certain tools on eating better to optimise health and I hope that anyone reading it will appreciate the importance of eating well as we have. Happy reading!
Postscript:
Margaret passed away on the 23rd of January 2017, peacefully and with dignity. It was exactly one month before her 45th birthday and around 3 months before our 20th wedding anniversary.
Margaret was the type of person that never gave up and she stayed positive and fought right to her last breath on this earth. I know without her attitude and lifestyle changes she wouldn’t have lived as long, or had the quality of life, that me and the boys will now treasure forever. I will now continue on Margaret’s legacy and continue the journey she started and strive for the happiest and healthiest family possible.
Margaret’s completed manuscript was at the publishers and it was very close to print but unfortunately she will not see it launched. Although with her strong personality and belief in the afterlife I am sure she will be watching everything comfortably from the other side. On our wall at home we have a sign that says “Some people look for a beautiful place, others make a place beautiful”… Margaret you were my life partner on this earth and our souls will be together, I love you.
Thank you, Andrew Cox