A very good friend of mine (also with an older daughter with PWS) reminded me of the early days, “back when…” and all the struggles we went through to get recognition for our children, to understand the syndrome, and to cope with the grief it brought with it. That got me thinking about grieving and how it’s so ongoing with PWS, but as time goes on you tend to pick yourself up and carry on. That reminded me of an article a father once wrote and submitted for a magazine I was editing at the time, and I thought it deserved a further look. He wrote:
“I had been looking forward to the birth of our first child. For months I had been fascinated by her movements inside her mother; at the beginning little fluttering and then as the months passed, stronger, more vigorous movements. It was exactly what one would expect of a strong, healthy baby.
“I was present at my daughter’s birth, an experience that defied words. All stories and films that had the birth of a child in them made much of the initial birth cry. I was absolutely unprepared for our experience: she arrived without a sound. I have a clear picture of the doctor holding her up, her little mouth shaped like a cry, but there was no sound. I am unable to describe what came over me at that moment. Words like “shock, disbelief” do not even hint at what I felt.
“My overriding reaction was what I can only call resignation; whatever would be, would be, and I had no power whatever to change any of it. I was devoid of feeling. That stayed with me for months. The only thing that broke through my lack of emotion in those early days was a kind of subdued elation when our little girl would actually swallow milk from an eye-dropper which was the only way we could feed her. Eventually our efforts weren’t enough and she had to be tube fed at hospital.
“At work, I was an automaton. I have little recall as to whether I was happy or sad, warm or cold; I had no appetite. I used to enjoy a drink. I never tasted the stuff from this time for months afterwards.
“As the hospital, testing continued to determine what the condition might be; I became aware how differently my partner was responding. She saw all tests as a challenge. I was indifferent to the various tests and as each eliminated this or that possibility, she saw all these as major victories. The diagnosis at this stage was ‘benign hypotonia’. I was conscious that I was unsupportive. My partner’s hopes were constantly undermined by my scepticism, actively negative, and yet I could not break out of the “what will be, will be” mindset. While my wife wanted to talk about progress and development and testing, I just wanted to be left to myself. I had closed off – little outside myself held any interest. I ‘escaped’ into Wilber Smith.
“A friend was a good listener, but I could only share at a superficial level. Talking was not helping as the overriding feature of ‘all this talk will not change anything’ undermined any chance of healing.
“The second stage was marked by my waking one day and noticing the sun was shining. I felt warm for the first time in months. This time pin-pointed another stage: anger. Wild mood swings, optimism (that our little girl would be ‘normal’ that she would outgrow this strange condition), followed by depression caused by the uncertainty of what the condition would mean long-term. I cried more now – most nights. Sleep was full of curious dreams and I would wake up exhausted. But there was less of ‘what will be, will be’. By now our little girl was drawing me more and more into her life. I felt I was able to share more of my partner’s hopes. The future seemed much less fixed.
“Eventually our daughter’s strange condition was diagnosed as Prader-Willi Syndrome. It took me a long time to accept this. I read all I could about the syndrome, the information coming from my partner’s research; a book here, a paper there, an article somewhere else. After a time, I noticed a shift in what I was feeling. The crippling resignation had given way to a hope that what was now did not have to be in the future. My wife was already planning counter-measures for our daughter to run against the classic symptoms – extra help for learning, exercises to firm up the little muscles, games to keep her stimulated.
“Sometimes it seems a long time ago; more often, it feels like yesterday. A kind of emotional evenness came when she was five and a wholeness at seven. The anniversary is still hard, but my partner eases me through it each year.
“Yes, we men do cope with grief differently. Education should enable us to cope better. I hope so.”
Contributed by Linda Thornton