Even though I have known about Joseph’s cystic Fibrosis for 15 months I still struggle to cope with the idea that my child has an incurable, life shortening illness and I probably always will.
Some days when he is well, which luckily for us at the moment is more often than not, I still imagine that the doctors have got it wrong, that they have made a mistake and that he hasn’t really got CF. Sometimes a few days will go by and I don’t think about CF at all, other than the routine medications and treatments. Then something will happen, I’ll get an unexpected hospital appointment or change in medication or I’ll read something or something will come on the TV about CF or children dying or hospitals that just knocks me for six and all the negative emotions will come rushing in again. Some days I feel I really can’t cope and I just cry and cry- even though nothing in particular has happened- it’s just the idea of my child having this condition that sets me off.
This happened to me the other day. I felt really down about it all and just didn’t know what to do. Then I came across this letter in the private lives section of the Guardian newspaper online:
“I can’t cope with my child’s diagnosis: I am haunted by the shocking discovery that our daughter, three, has a condition that may cause her to die in her teenage years. How can I come to terms with this and learn to enjoy the time we have?”
About four months ago, our three-year-old daughter was diagnosed with a rare degenerative condition. This was a complete shock – our only concern at that point was a little delay in her language development – but a particularly astute paediatrician tested for the disease. The condition will lead to mental and physical deterioration that will result in death in her teenage years. There is no treatment available, just palliative care.
Our lives have been turned upside down. For me, it has felt like bereavement, as I find it difficult not to keep thinking about the loss. This is despite the fact that, at the moment, our daughter is happy and healthy, although she does challenge us in her behaviour because her ability to communicate is limited. We have also been told this will get a lot worse.
We see it as vital to keep the family together – we have another child – and are trying to make use of all the available support. However, every now and again, a dreadful feeling overwhelms me. I know it is not going to go away but learning to live with it feels impossible too. The whole world feels different as I notice children or young adults with severe disabilities and imagine our daughter at that stage. How do people get through circumstances like these? I know life has to continue as “normal”, but part of me feels that it shouldn’t. I want to try to enjoy the time we have, but the fear of what lies ahead dominates my thoughts.
This letter really struck a chord with me. Then I read the responses- all by people who have been through or who are going through similar things and came across this one from a CF mommy who happened to be the Expert agony aunt:
I have always made it a policy never to refer to my own circumstances when trying to help readers with their dilemmas, because that approach strikes me as less valuable than what I hope I can offer from my professional training. In your case, however, a reference to my own family may comfort you.
Twenty four years ago, my eldest child was diagnosed with a life-threatening condition – like your daughter, seemingly out of the blue. In his case it was cystic fibrosis. The consultant told me that he would be lucky to live to be 10, so severe was his condition and so limited were the treatments available at that time.
I, like you, felt my world had been turned upside down. But I soon noticed that my son simply refused to recognise that he had any illness. True, he complied with the exhausting and rigorous daily treatments and I did his midday physio at school – often in the classroom, during lessons. He continued his schoolwork during his frequent hospital stays, so he never lagged too far behind academically. We travelled and I took him to films, parks and restaurants just like other families, even though we had to take along physio mats, nebulisers and medicines.
When he turned 11, again the doctors told me his death was imminent. However, by that time lung transplants were becoming more successful. This was something that would never have been considered when he was first diagnosed. Jonathan insisted on being assessed for transplant, and although the consultant told me my son had little chance of surviving such a gruelling operation, he put him on the transplant list. He said he had never met anyone so determined to live.
At the age of 13, Jonathan was offered a double lung transplant. The next two years, of threatened tissue rejections and myriad illnesses and operations, were grim.
I was a single mother then, with two younger children to look after as well as Jonathan. But it was well worth carrying on, because my son loved life too much to ever stop fighting.
Today, at 25, he’s thought to be one of the longest-surviving double lung transplant patients. He has new lungs, but still has cystic fibrosis. Nonetheless, he was married last year to a wonderful woman. They have two much- adored dogs (cystic fibrosis is genetically transmitted), and he runs his own business.
Your daughter’s diagnosis is terrible news, and the fact that she may lose cognitive function makes things harder for you in many ways than it was for me. Nevertheless, neither you nor the doctors can be certain of what the future will bring. Perhaps there will be a cure for your daughter. More likely not. But the important thing is that today she’s happy and healthy. You should accept the diagnosis, but you needn’t accept the doctors’ description of her future. For example, it may well be that her ability to communicate will, as they say, deteriorate. But you can find ways to respond to the changes she may undergo, and learn to manage her challenging behaviour well.
Don’t waste your precious energy imagining a future that may not happen. Instead, teach your daughter – and your other child as well – to love life right now. That way, she will want to stay alive, and to stay well.
It also means that, for however long she lives, you will all have lived as fully and as richly as you could possibly have done.
(You can read the whole article and all the responses here.)
This letter has really helped me and I am on a journey to try and love life right now so I can teach Joe to do the same. I hope this letter can help someone else struggling too.