When I began researching our personal history for the purpose of my new book “A Different Path”, I came across this article that I had typewritten and which was published in a disability newsletter, over 28 years ago. I have included it here for two reasons:
- Because it is an accurate description of what happened at the time and
- Because it illustrates in many ways how very little has changed in disability and social care.
As you read, please be minded that this was twenty-eight years ago when Emily was ten years old.
FOR THE LOVE OF EMILY
Written 28 years ago.
I’ll always remember the doctor’s words; “Your daughter has suffered severe brain damage; she’ll probably be a little slow.” An understatement as we now know.
“It is ten years since Emily’s traumatic birth. Ten years in which the lives of my family and myself have been changed almost completely. Not only have our circumstances changed, but our personalities have changed too. In many ways we are different people. Of course, it’s a natural process of life for each of us to change with each new experience, but I would venture to say that having a severely handicapped child is one of the most profound, emotionally distressing, and yet strangely rewarding experiences of all. In its most subtle sense, what I am saying is that we have changed for the better because of our experiences with Emily and becoming more proficient and compassionate individuals. That’s rewarding.
I hope I’m not painting a rosy picture. Watching your child suffer day after day is hardly rewarding but doing whatever you can to alleviate that situation, is. In ten years, Emily has undergone fifteen operations, nine of them in the last six months. Many were serious, especially brain operations. That’s a lot of pain and suffering for anyone, for a disabled young child, especially so.
When a family is first confronted with the knowledge that their child is severely disabled, one of two things happen: either they face up to the reality of the situation and resolve to get on with it, or they don’t. Let’s take the first instance first. Things will get better and worse as time goes on.
As time goes on, they will learn to accept this new way of life, warts and all, with lots of challenges and great stress. But day by day, it becomes more bearable. Their love for their child will grow and they will experience great personal realization. But things will also get worse. As the child grows so does the disability and the additional needs, and meeting these increasing needs becomes a great strain. Remember, as the child grows older, so do the parents/carers. Still, motivated by love, they battle on.
In the second instance, either one or both parents may find it impossible to cope and relinquish all responsibility, abandoning the child to the care of someone else. More often, if this is going to happen, it usually happens in the earlier days when they realize they cannot deal with the situation in the same way as those in the first instance. Mostly, the parents will set off with every intention of making the best of what has befallen them, only to find that with all the goodwill in the world, they are unable, either physically, mentally, or emotionally, to endure the pressures that this new life is presenting. Whilst the words ‘selfish’ and ‘uncaring’ may spring to mind, please remember many of these parents are still young and still coming to terms with taking responsibility for their own lives, and this new and dramatic situation can prove devastating. Liz and I were, dare I say, a little older (36 and 40 respectively) when Emily was born, a bit more mature (I hope) and used to certain responsibilities, and we also had two other healthy children.
Emily was born three months prematurely. Liz had been hemorrhaging and was in critical condition, so Emily was brought into this world at that time to save both their lives. Liz maintains that she will always sacrifice her own quality of life for Emily because Emily sacrificed her quality of life to save her mother.
I’ll never forget that night at the hospital. Both Liz and Emily were on life support machines. I felt so helpless, worried that I could lose either one or both. Thankfully, Liz improved, and soon we visited Emily with our other two children. Emily was on a ventilator fighting for her life and we knew that if God allowed her to win this fight, the next fight would be ongoing for the rest of her life. We vowed there and then that we would fight alongside her to give her the best chance of a happy and loving life, at least to the best of her and our abilities.
The outcome of this difficult birth was that Emily had hydrocephalus (fluid on the brain) and cerebral palsy (brain damage). To what extent this would affect her future abilities, we did not know, only time would tell. We watched her struggle to survive. Her best friends then were the machines that kept her alive. We desperately longed to hold and cuddle her. We watched helplessly as she suffered fits and convulsions. We asked questions, we wanted answers because we wanted to help. Not being able to hold and help your own little girl when she is in such obvious distress, is heartbreaking and frustrating to the extreme. But doctors would tell us very little, again only time would tell. I can never understand the reluctance of some doctors to be straight and up-front with information that all parents have a right to know. We were and still are sensible and realistic people. But even if we weren’t, what difference would it make to our daughter’s life, what would be would be, regardless. But armed with the truth and the facts, we could prepare the path for Emily’s future needs and rearrange our lives to deal with them.
The eventual diagnosis came much later, and it was far from official. Emily was six months old, and we were already managing her disability and illnesses when a letter popped through the door. Inside there was an invitation to a meeting with Spastic Society. The word ‘spastic’ is well-worn, but because of years of misuse by people who should know better, the organization has been renamed ‘Scope.’ However, its purpose remains the same: to help people with cerebral palsy. Sometimes I think we attach too much importance to words and not enough to their meaning. Historically, words like ‘crippled and handicapped’ were commonly used and accepted, until someone took offence. I wonder how long it will be before the terms disabled and cerebral palsy are replaced. At the endo f the day if the same level of concern was attributed to researching and improving the condition as to arguing over its name, perhaps we could make better progress. Well, now at least we knew. Of course, we knew all along really, but wouldn’t it have been nice to have been told formally? Anyway, instead of feeling foolish when people asked what was wrong with Emily and we had to shrug our shoulders, we could now proudly say: she has cerebral palsy of course.’
Our local hospital was not equipped to provide the neurological support that Emily needed, so at just a few weeks old, she was transferred to a hospital twenty miles away. To this day, this is the hospital she attends for most of her medical needs, especially the major ones, though unfortunately, she attends there too often.
Because Emily had hydrocephalus (fluid on the brain), doctors had to insert a ‘shunt’ which pumps and disperses the fluid into the body. Without this, the build-up of fluid puts pressure on the brain. In Emily’s case there is no other outlet for the fluid so when the shunt blocks it requires immediate attention, usually a brain operation within hours of the symptoms appearing. Failure to do this, at the worst, could be fatal, or at least, cause further brain damage. So, vigilance and round-the-clock attention is vital.
Babies with cerebral palsy do not always appear different to other babies. At this stage they all must be nursed and fed and cared for, until they begin to do things for themselves. This is where the similarity ends. Some children with cerebral palsy are more able than others, but none are as fully capable as an able-bodied child. Nevertheless, we stayed optimistic about Emily. Despite her early problems, she was a happy child. She had begun to crawl, albeit commando fashion, across the floor. She was able to hold objects and was capable of limited play. Slowly but surely, there were signs of progress. Then when she was just two years old, she was again taken ill. Liz and I immediately recognized the symptoms, and we rushed her to the local hospital.
Emily was clearly in pain and crying constantly. She was seen by a doctor, who despite our objections, diagnosed constipation and treated her accordingly. Furthermore, this hospital has no neurological department or specialists. As the hours passed, she continued to deteriorate. We told the doctor about Emily’s shunt issues but still he insisted it was severe constipation. We demanded to see another doctor but were told “they’re all at the International (rugby) match! By now we were desperate and suggested she be transferred to the UHW in Cardiff, 20 miles away. We were told that because it was the weekend it couldn’t be arranged and if we took Emily away from the hospital, they would accept no further responsibility. However, if she was no better on Monday morning, they would arrange it. Emily got worse. On Monday morning we rushed her to the UHW but while waiting to be seen, she stopped breathing. Thankfully, due to the prompt actions of a nearby nurse, she was revived and immediately admitted for an emergency operation. Once again, Liz and I were at her side as she underwent crucial brain surgery.
Sadly, the outcome was not good. Emily had suffered further brain injury. As she began to regain consciousness it became apparent that she had lost her hearing and her sight. We were stunned. The children had joined us in visiting Emily that evening expecting to greet her during a successful recovery. Instead, we were all faced with the fact that she had experienced an even greater handicap, one that we knew she would need immense support in overcoming.
During the weeks that followed, Emily’s condition was touch and go. She suffered several setbacks until eventually, after consultations with the medical team, it was agreed there was nothing more they could do. It was up to Emily now.
However, typical of her determination to fight and survive, which had been evident from the day she was born, slowly but surely and against all the odds, she started to improve. Thankfully, she regained her hearing but sadly not her sight. The emotional stress took longer. For four years she was unable to sleep at night. Liz and I took turns sitting with her through the night. Needless to say, the strain took its toll on us. Claire and Dale were also under strain. They were both in school and we didn’t want their education to suffer. Claire had already spent evenings doing her homework at Emily’s hospital bedside, and Dale had helped us care for Emily through the night. Still, they hardly missed a day at school and hid their worries well. For many years they were our only support and pillars of strength. I firmly believe their experience with Emily, as children themselves, has been character building and created two strong and compassionate characters and made Liz and me very proud.
A child psychologist was called in to advise on Emily’s sleeping problems I remember he called regularly, it was always early on Tuesday morning and Liz and I could hardly stay awake to talk to him. Eventually, he came up with a special subliminal cassette tape, designed to create a state of deep relaxation and guaranteed to hasten sleep. That night we put Emily to bed anxious to see the results of this ‘magic moment.’ With the soft hypnotic music playing quietly in the background the effects were almost instantaneous. Within minutes I was fast asleep, Emily wide awake beside me! One of the redeeming features of this family is its ability to see the funny side of life. A sense of humor is a great sustainer, even when you are tired out.
TO WALK AND TALK…
Emily cannot walk, talk, or feed herself. She is tube fed, has poor head control and cannot sit unaided. But losing her sight caused her the greatest anguish. She had few faculties as it was, but her sight was so important to her, and a gift to us all. She loved watching TV and looking at pictures, and she recognized us all by sight. Now she identifies us by voice. But I still live in hope, and when I come home, I tip-toe quietly into the room in the hope that she will look at me and smile with recognition, as she used to. Instead, although she is aware by sound that someone is there, she does not know who. That big smile comes when she hears my voice.
When a child has multiple disabilities, it’s not easy to decide which ‘ability’ requires priority. I cannot understand why ‘walking’ often seems to be the focus, even over and above ‘communication.’ The famous Peto Institute in Hungary was founded mainly to get disabled children to walk, because the authority’s policy insisted that if a child could not walk to school, they could not be educated. Fortunately, in this country all disabled children can access special education with access to speech therapy and communication aids to help them. Imagine a child in Hungary struggling to walk to school only to find that they cannot communicate when they get there? Just seeing Emily’s frustrations as she desperately tries to communicate with us puts ‘communication’ at the top of our priorities.
CAN WE HELP?
Up to now I have been generalizing about disability as well as relating to our direct experiences with Emily. But as this article is primarily about Emily, I will illustrate how she is a special needs child with greater needs than many, and how Liz and I intend to meet those needs and hopefully set a precedence for other children and their families. If you are a parent/carer struggling to care for a disabled child, hopefully, our experiences can help you.
As Emily cannot speak or communicate in any way, when she is ill it is very difficult to diagnose the problem. It becomes a ‘process of elimination’ often putting her through unnecessary and painful examinations and pre-treatment. Serious illnesses, urgent operations and lengthy hospitalization have become a way of life for her and us. And so, for Emily, the illness has become paramount over the disability.
Because of their very nature, our circumstances demand that we look for a consoling factor in all of this. Liz and I console ourselves with the fact that apart from losing sight at two years of age, Emily knows no different. She has never been able to walk, talk, or feed herself, and has always been dependent on others for everything. She and we celebrate every little progress she makes, no matter how small. Every little achievement is accompanied by a round of cheering and applause; it is a bonus, and it has created a very happy little girl.
Claire and Dale are now grown up with lives of their own, though they spent much of their most influential years helping us care for Emily. Their love and devotion to Emily is as great as ever and has taught them to show compassion and empathy to anyone who needs it. The family unit is very important to us and I believe, combined with a strong sense of humor, we can face any adversity that comes our way. I just pray that we can sustain our health and energy levels!
MAGIC WORDS
There are such things as magic words. These are positive words that can be used to replace other words. I don’t mean like using a thesaurus, I mean magic words that you can feel. Here’s an example. The subject of this article is about what most people would regard as problems, and pretty big ones at that! In fact, unlike most everyday problems, these could be considered unsurmountable. You will notice that the actual word ‘problem’ has only appeared a few times when there was no alternative. So, Liz and I have managed to substitute problem with ‘challenge.’ See, the very sound of the word ‘problem’ instills feelings of despair, worry, and negativity, and a tendency to avoid the issue, perhaps even to run away from it.
OK, try replacing it with CHALLENGE…now see what happens.
Suddenly, you are determined to face the issue head on. Challenge dares you, defies you, invites you to beat it. It is a positive word of courage and persistence and unlike conceding, it commands your inner strengths and emotions to overcome it. To resolve it. To master it. It’s the magic word that motivates this family. We don’t have any problems, though we do have lots of challenges.”
End.
NOTE: I am still in the process of writing ‘A Different Path,’ however, if you would like a free copy on completion, please email johnweaver95@hotmail.com with your contact details and ‘ADP’ in the subject box.
Thank you.
Emily's World 