Birth of a child without a future- Cystic fibrosis -death of hope, dreams

My son was born with Cystic Fibrosis: Life limiting and degenerative. It can only get worse. There is no cure and life expectancy is unknown – five years, ten years or thirty years. When he was born, I lost my horizon. We assume we raise a child to eighteen. I did not have that horizon.

So very many conflicting emotions and thoughts disturbed me when he was a baby:

• As he matures he would always be dependent on me financially and emotionally to see him through to the end of his illness.
• I was never going to be independent of my child and at that time, I felt it was a prison sentence. No remission.
• There was the total love a mother has for her new baby and the total dread and fear of dealing with this alone because I knew my husband was going to be totally useless.

I was in a downward spiral, thinking that this was the end of my life and it was all for nothing.

However, my thoughts were also: ‘I will deal with it. I know I’m strong enough to deal with it.’

The only advice I was given was to live each day at a time. Impossible for someone who has to run a busy house, a full time career and has had to plan everything. Suddenly, you can’t plan at all. Everybody is affected by it. I can only describe it as standing in quick sand.

Everyone else went back to work, or to their routine. I felt isolated, lonely. The doctor told me the only thing which would affect my son’s outcome was how well I could care for him: the physiotherapy, drugs, care and attention were all now down to me.

Q. How did that affect you?

Ten years later, I was treated for acute depression.

I found myself looking at life from a parallel track. The view from my track was the same as everyone else’s but I can never go back to the other side. I will always now, on a daily basis, have to deal with the prospect of the death of my child. I may have looked happy and believed I was happy, but I could never be truly happy again. I became quite hardened and disengaged. I was difficult to be around. I was constantly working harder to keep in control and subsequently became depressed.

Many weeks at a time would be spent in hospital. It was hard for everyone and although I did not want to have this problem, I did not want to be without my child. So I was treated for depression with drugs and counselling but not nearly enough counselling. The financial costs were high for me. My budget was stretched. I was paying for my two daughters to go to boarding school because I had to spend so much time in hospital with my son, sleeping there, sitting there. I had a mortgage to pay and my husband was ‘just not able to work’ with the stress his life was under.

Somehow, I managed to manoeuvre all that my high-powered job required. I had to keep my job.

I got into debt and had to take out a second mortgage. I finished off isolated, anxious and had this mountain to climb and I had to climb it every day. The marriage suffered. It was clear there was no room for someone who was not pulling their weight.

For the first five years after my divorce I was happier. I wasn’t propping up a man who also suffered from depression. When my son was growing into adolescence, and learning to cope with his illness himself, I then worked on paying off my debt, rebuilding and trying to participate in a normal life again. It’s hard finding the right people who can support you.

Q. Where has it left you?

I am now on the other side of an abyss. I never look back. The depression is like a black dog that you know is behind you but I don’t ever want those feelings again of ‘the blackness, the I can’t believe I’ve woken up again, that I’m still alive, that I’d do anything just to die, but without killing myself’.

Q. How do you get through a day?

I had to put safe boundaries around myself. I couldn’t overdo it. I admitted when I was tired when I couldn’t do it, when it was too much for me. I asked for help. I shared with people how bleak it was.

I had to lose the people from my ‘first life’ because they couldn’t handle it; they did not want to hear. I had to find people who were willing, open and able to ask me to share it with them : A whole different kind of people.

I was given two visualisations by a psychologist so that I could confront this life of mine at my own pace.

Metaphorically, I put all the troubles, difficulties, fears into a box, a box in a cupboard. I could look into it sometimes, slowly, at my own pace. I could also have a good look at all the stuff in the box to see how well I was dealing with everything related to Cystic Fibrosis.

Or … the Cystic Fibrosis (CF) could be like a coat. I could confront it very slowly at my own pace. I could choose when to put the coat on. When I took it off, I could visualise being someone else.

If there was a two-week hospital spell when my son was ill, I put on the C.F coat and walked with that, for that time. In the earlier days, the coat would have been on all the time. The dread and fear. I don’t need to work with ‘the coat’ visualisation any more.

In my mind, I was always planning to bury my child. In fact, that may not be the case. I have had to change my mind set. Be brave enough to hope. I have had a couple of years respite and I may have another ten years. My life revolves around his hospital visits and stays: On-going and chronic. It comes and goes.

A Positive Message.

If you can find one or two stepping stones, that’s all it takes to get your foot on the first stepping stone – out of the bleakness and a reason to find that stone and start walking.

When you reach crisis point, the resources are there. Things can turn around. My GP was fantastic. The NHS was fantastic.

I had a personal trainer. I used to run myself into the ground to deal with the pain of it all. She made me write lists after my run about all the things I had to get done. She recognised I needed support. She gave me tasks I had to do. She did not need to do this. It was not her role, but she helped me.

I found an excellent organisation, Community Service Volunteers (CSV) through the local authority. They provided a carer. This was amazing and made such a difference.

I have two beautiful daughters. I am married again to someone who is big enough to understand and able not to compete with the complexities and demands of what I have to do with my son.

Time helps too, of course. My son had grown with this. He is a man. He no longer needs me in that emotional context any more. He asks for my help when he needs it.

I have given away my ambition and certain material possessions. I accepted that my life is defined by other factors other than what I could have done. I let it go. I have other priorities and I am now much more relaxed about my future. The job I have now does not stress me out. It fits around my life. If I have to rearrange my timetable, I can. I don’t need to reschedule board meetings, tell untruths. I run my own business. My view of my world and what constitutes a good life is different.

I was warned by my doctor that I would emerge from counselling a different person and I should be prepared for that. In the past I had taken on jobs, really big, powerful jobs and was big and bold enough to do it, without thinking about the stress and how it would affect me. After the meltdown and being off work for six months with depression, I de-stressed my life completely.

But of course, I then needed challenges. The difference is I know when I am feeling my stress levels rise and I stop going any further with whatever it is. I find that quite liberating and have no qualms about saying, ‘No, that’s my boundary reached. If I go any further I could get pulled into the abyss again.’ I am not going to do that.

Anon

When I wrote my book Survive and Thrive after Trauma in 2012 a section shares interviews with those now thriving after an emotional challenge. Those I interviewed who shared their message will have continued along their path of increased learning, self joy and self awareness. We are not alone; should we choose we can learn from others, take and use information generously shared, be encouraged and in some cases, be enlightened.