Cystic Fibrosis is a genetic condition that affects approx. 1 in 25,000 newborns. Although technically a rare disease, cystic fibrosis is ranked as one of the most widespread life-threatening genetic diseases. Cystic fibrosis (CF) is a chronic illness that affects the digestive and respiratory tracts resulting in generalized malnutrition and chronic respiratory infections, there is currently no cure for CF however early diagnosis, better treatments and significant research has improved both the quality of life and the life expectancy.
However 18 years ago I knew none of this and was blissfully awaiting the birth of my fourth child. At the beginning of February, my beautiful little boy made a speedy and timely entrance into the world. Like all parents’ I spent the days following his birth, gazing at my wonderful little boy, falling in love with him and imagining a long, healthy and happy life filled with wonderful adventures and experiences. Although he was a little small, I breast fed him as I had done with other children and he thrived, and at his six month check up he had gained 10 pounds.
He was my perfect blonde, blue eyed boy, he slept well, ate well, rarely cried and when he was awake, he smiled and cooed at everyone, but at 7 months old, all that changed. He was hungry all the time, so I introduced solids, which seemed to help for a little while, but he became fretful and unwell, my GP was a great support to me at this time and we agreed it was probably an allergy, so I tried other foods which again only worked for a short time. I did some reading at this time, and what kept cropping up was allergies, coeliac disease and cystic fibrosis. But I pushed cystic fibrosis to the back of my mind. That couldn’t happen to my family, it just couldn’t. I delayed returning to my GP because I was by this time terrified and I was also very unwell myself, with repeated attacks of painful mastitis, as a result of his sporadic feeding. I kept hoping that something would click into place and everything would be well again. Eventually though I had no choice, he was losing weight and something had to be done.
He was admitted to hospital immediately, and tests were done as an emergency, including a sweat test, and I awaited the results. As the time passed by, I became a little more reassured, surely if it were something serious I would have heard by now. Shortly before 5pm though, a group of people started collecting outside our door, and my body went cold, I started shaking and this voice inside me was screaming ‘go away’ over and over. My little man had cystic fibrosis. My first thoughts were you’ve made a mistake, you must repeat the test, and that I was going to outlive my child. But they were in no doubt, the sweat test had showed a significant level of chloride. Everyone was very kind and supportive, but I was in shock and had started grieving for the life my child should have had. I was raised a Catholic but hadn’t practiced or prayed in a long time, but that night after Fin had fallen asleep I went to the hospital chapel and cried.
What I remember most though about that time, was the young couple across the hall from us. Their 2 year old son had been brought in to hospital to die. I’d never before or since seen that much pain, terror or desperation etched into someones face, or sheer physical exhaustion in their bodies. Shortly after the doctors and nurses had left our room, there was a gentle knock on the door and she came in and sat down and said in a very quiet voice, “I’m not going to pry, but I know you’ve just had bad news and I thought you might need company”. In the final hours of their sons life, she was there to support me, and that to me was humanity at it’s finest. In the days and months that followed, when I started feeling sorry for myself, I thought of her and it gave me great strength. Their little boy passed away that night and they slipped quietly out the hospital and I never saw her again, but I have often thought of her and her kindness and gentle strength.
Over the following days, we started meeting the CF team, Phsyio’s, Dietitians, Cathy the CF nurse and Dr. Brendan Watson our consultant, more tests were done, medication started and relevant information was given, to enable us to have better understanding of what was happening. Cathy was amazing, with her wonderful and kind nature and she reminded us that it was important to always keep hope alive and to keep a sense of humour. Dr. Watson, who sadly passed away 6 months ago, was equally inspiring, and always referred to the parents as his Mummy’s and Daddy’s. A wonderful pioneer in the treatment of CF in children and kind and compassionate man.
My son responded rapidly and well to treatment and we’ve been blessed that he hasn’t had many chest infections, in fact his first serious infection which required long term IV antibiotics only occurred when he was 14, he’s had a few since then, but the treatment is excellent and he has had no permanent damage to his lungs. He is a very healthy 17 year old with cystic fibrosis. We’re a long way from the death sentence I imagined all those years ago. Treatment for CF has improved greatly over the last 20-30 years and CF patients are living longer and healthier lives as a result. Granted our days revolve around his medication and physiotherapy, but that is a small price to pay. Fin’s understanding of his condition isn’t great, he also has Aspergers, which can complicate matters, and we’ve had to gradually give him more information as he has been ready to comprehend and understand it, but as time as passed, he has started taking more responsibility for his treatment and physiotherapy. We are very hopeful for his future.
We moved to adult department at the beginning of last year, a change that was more of a struggle for me, than for him. Foe me, it was like the final stage and despite everything going well, it was the slippery slope, but we’ve been reunited with Cathy, who moved to the adult department a number of years ago and that was great. Our very first visit, I explained to Cathy how I was feeling. She understood and reassured me with facts, they have people in their 60’s and 70’s in the clinic and with the advancement of treatment, they are for the first time having to treat people with cystic fibrosis for age related disease.
While Fin’s health has been great and we are one of the lucky ones, and there are many more like us, it hasn’t all been plain sailing. I’ve gone through great emotional turmoil, as a parent, I’ve played the blame game, I’ve sobbed and screamed and I’ve grieved for all those hopes and dreams, especially in the early days, but it does get better and all those feelings lessen and you just get on with it. It may not be the life you dreamed of for him, but that doesn’t mean it can’t still be a great life. And we’ve had some wonderful experiences and met some wonderful people along the journey. And we’ve also had experiences which we can laugh at now, such as the time we arrived at the clinic at 8 in the morning, to utter the immortal phrase “The cat pulled the iv out”, I’m quite sure they’d never heard that one before or since. You don’t think that’s funny, well maybe you had to be there. All in all, I’m a better person for my experience, I’ve learnt what’s important, of how strong I can be and of how important and precious every minute of every day is.
So why am I writing this, my son is shortly turning 18, a wonderful milestone and I wanted to explore my own personal journey. But more importantly, I’d wished that I’d had someone who understood what was happening for me, someone to talk too. The team were brilliant and answered any questions or concerns I had but it wasn’t the same. I wished that there was someone there to tell me, things will get better, that everything you’re feeling is normal, and that I know what you’re going through. Another parent. It’s okay to cry, it’s okay to grieve, it’s normal to blame yourself, but ultimately in the end, it’s not your fault. I still cry, I’m crying today but that’s okay too, because sometimes waves of grief and sadness just come out of the blue and you just have to go with it. Keep hoping, laughing and smiling, it will take you far.
Don’t be fooled by me. Don’t be fooled by the face I wear for I wear a mask, a thousand masks, masks that I’m afraid to take off, and none of them is me.
from the poem Please Hear What I’m Not Saying by Charles C. Finn
The world is reeling from the news of Robin Williams suicide. It’s impossible for us to reconcile ourselves to the fact that this man who brought such joy and laughter to the world, could have been in so much pain himself.
If this teaches us anything, it’s that depression does not discriminate. from rich or poor, young or old. Here was a man, so celebrated and loved, by family, friends and the world at large. A wonderful and beautiful actor and comedian and by all accounts a man filled with such great kindness, and yet he was not immune. Depression and suicide, doesn’t make sense and there is no point in trying to do so. Depression is not a life choice, but an illness that can strike at anytime in anyone. And sometimes it’s a fatal illness, we need as a society to become more educated about the illness, to take it out of the dark ages and lift the taboo and then maybe many others who suffer in silence may be saved.
There has been outpourings of grief, sadness and support from across the world, but sadly there has also been condemnation as everyone tries to make sense in their own way of what has happened. But condemnation only seeks to diminish our humanity, and yes we are all capable of finding some level of compassion for others, if not understanding.
If you consider this, each and every one of us has felt despair and loneliness at some point in our lives, many have experienced the devastation of depression and for some the pain is so intolerable and consuming that they consider ending their own lives. Some survive, others do not. Look to your own experiences, open your heart and mind and just for a moment walk in someone else’s shoes.
Robin Williams has me laugh and cry many times, but never more so than now, as I recall the maniacal, jubilant and vulnerable man who was Mork from Ork. I’m deeply saddened by his passing and the world is a little emptier and sadder for it.
Rest in Peace.
“There is a sacredness in tears. They are not a mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.”
It’s a year now since my dear friend Liz passed away and the grief is every bit as raw today as a year ago. The year has been tough, at times unbearable, and I’ve missed her gentle strength and loving support. My 50th came and went and she should of been there. Sharing my daughters debs photos, she would of loved the dress. But most of all, all those times I saw her in shops or walking down the road, it should of been her.
What do I wish for, I wish she was still with me. I wish for piano lessons and coffees that never will be. I wish my youngest son had been born with good health. I wish that life was fair and I wish that this earth of ours was a great utopian world. I wish…I wish…
Sounds a bit like a Miss Universe speech, doesn’t it, complete with fluffy bunnies and cute puppy dogs. But who wishes for death, or babies born to a lifetime of ill-health.
But whats wrong with wishing and dreaming, with wishing and dreaming our life finds some direction, without direction we wander aimlessly through life. How do we walk that fine line, of dreaming and wishing and yet accepting what is meant for us and letting go of the rest. Do tears bring that peace, that allowance, that acceptance. I’m beginning to realize that accepting that moment, shedding tears, then moving on is the best I can do, gentle waves of grief.
And that’s how I grieve for Liz, playing the piano often gives me that space, the tears blind me to keys in front of me. I’ll know when my grieving is lessening, simply playing the piano as my tears lessen.
Should we ever let go of even the most unrealistic of dreams, wouldn’t our life become mundane then. Who knows what is around the corner, we must take every opportunity to embrace the wonderful, expected or unexpected that life gives. I simply can’t let go of my dreams and now I’m back where I started.
Till we meet again, Liz.
“The happy ending of the fairy tale, the myth, and the divine comedy of the soul, is to be read not as a contradiction, but as a transcendence of the universal tragedy of man.”
Joseph Campbell Author of The Power of Myth
As I look back over my 49 years, I can see clearly many peaks, I can also see troughs but as my thinking changes these are becoming ever so hazy. But you have to all the same appreciate those troughs for what they are because the peaks are ever so more delicious because of them.
This weekend brought to an end a journey, both emotional and physical, but I suppose it really started 4 1/2 years ago. A wonderful time for me, a time of exploration, trust building, a growing and deepening self-respect, in essence an opportunity to change my default setting and of seeing, really seeing new possibilities and opportunities and grabbing them with both hands.
Redundancy a year and a half ago rocked me, but made me rethink and build new dreams and the skills I learnt 4 years ago allowed to embrace them. I’ve come to the end of the formal part of my advanced diploma study in Hypnotherapy and Psychotherapy but my journey continues. I feel so alive, and fulfilled and I’ve met wonderful people and we’ve supported and grown together.
Changing my default wasn’t easy and I still go back to the anxious, negative me from time to time, but now I don’t stay there so long. In fact I hit rock bottom four months ago, but I got help from my doctor and my friends old and new, and that has made this weekend all the sweeter. If you ever get a chance to look at ‘This is Water’ by David Foster Wallace on youtube, prepare to be inspired.
I think what I’ve learnt is that crap happens, you can’t ignore it, it’s part of life, embrace it, it has a lot to teach us, but don’t wallow in it, because there is only really one way to go from there, all the way up.
This is my story, my truth, my awareness and it really works for me.
Two or three months back I was thinking 2012 should have been my year, the year of the Dragon, my Chinese astrological sign. My year for wonderful things to happen. Dragon the fearsome, loyal, kind and hard working, the traits that could lead me to greatness.
In the last two weeks of 2011 I was made redundant from my job of 8 years. If you’d asked me to sit down and think about what defined me, my job would probably not have made it to my list. But losing it undermined my very core. For me it was about security in a world in recession, an income, getting out and meeting people, and in holding down that job, a belief, that what I did, I did very, very well.
At first I embraced the opportunity for change but when the shock was replaced with the reality, my optimism seemed to die. I reeled through the emotions like a woman possessed. Fear, frustration, helplessness and a loss of control over my own destiny, anger, so much anger, mainly towards my employer, someone I’d once counted as a friend and a sense of betrayal. My demon was the alter-ego who has dogged me most of my life. She ridicules me, second guesses my intuition, stamps all over my dreams, she takes me by the hand and leads me down the path of the worst imaginings my mind can create, and devours my confidence. And she always shows up when there’s a flicker of weakness. “What’s the point in trying, you know you’re going to fail”, my perfectionist/procrastinating nature chimes in.
If only I had been left to my own devices, I could have coped. Lunarcy the everyday and my alter-ego Lunarcy the superhero, righter of wrongs and with the ability to take flight and soar, working together we could have been amazing, we could of risen to the challenge, but my demon was in her element.
The turning point, my 48th birthday, end of April, all I wanted to do was sleep through it. Friends though had other plans, a surprise party (the surprise bit I spectacularly messed up – no point being a perfectionist if you don’t do something spectacularly). I went begrudgingly, annoyed with them for forcing me to acknowledge the event. Sometime during the night though something wonderful happened to me. Something shifted in me, what it was, who knows, I still don’t. Maybe it was just being in that room with people who just wanted me to be happy. I wonder do they know how important that night was to me, how much strength I gained from their presence, thoughtfulness and warm friendship, and how it helped to turn my life around.
I now have a direction, I won’t say plan, for me now, plans imply something set in stone. A direction allows me to move forward and allow for change. I’m going back to learning, am I scared, hell yes, but I won’t allow that to derail me. I want to explore an area that intrigues and energizes me. Psychology and Hypnosis, the mind, infinitely creative and destructive. The power to conquer and defy our past or to bring us to our knees. A text delivered a selection of books to me, “some summer reading” he said. Light summer reading it ain’t. I laugh, but I’ll enjoy them so much more than some soppy novel.
I still struggle with this desire to be nothing less than perfect, but the dream is strong, and hopefully enough to push me out of my comfort zone.
I know now that losing my job wasn’t the beginning of the end for me. I was never going to jump, I had to be pushed and glorious new starts often include pain, fear and doubt. Perhaps 2012 will be my year to shine after all.
Where do I see myself in October/November and beyond, will it be with my hand shooting up to answer yet another question, teeth grinding behind at the Noddy Know All in the front row, or standing behind the toilets smoking trying to look cool but in reality just terrified by life. I’m hoping closer to the know all, but without the ‘me being annoying’ bit.
For now I’m reading my books, swotting as it were. A challenge presents itself, deliciously tantalizing and I’m poised and ready. I sit relaxed, a smile comes to my face, and a sense of excitement and the beginning of my path to fulfilment, as the words swirl into my brain, like fingers massaging the little grey cells long dormant, I think ……..
“I wonder does he have any copies of these books in English”.