Wednesday 7 December 2016

My son has CF: how can I ensure he has a normal childhood?

Published 20/12/2011 | 06:00

I have a great one-year-old little boy. He was born with cystic fibrosis (CF) and has spent a lot of his first year in hospital. Thankfully, his health is manageable at the moment.

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I have left work to care for him and be a stay-at-home mother. I feel under extra pressure as a mother of a sick child. I want to ensure he is a strong and grounded boy. I want to help him cope with the extra challenges he will have to face because of his illness and the routines of medication and physiotherapy each day. I also worry constantly that I want to balance a normal life but yet we know his life expectancy is shorter than most. How do we cherish every day while not spoiling him?

I am constantly told by people to treat him as I would another child but, firstly, he's our first child so I'll never know what kind of a mother I would have been to a healthy baby and, secondly, his life is not normal. I appreciate any advice you can give us to help give him the best possible start so he can deal what life has to throw at him and look back on his childhood with extra-special memories. I want to do my best as a mother.

It must be incredibly hard to look ahead and know that your child may have a short life expectancy. No doubt you have researched CF and understand the illness and the implications in terms of treatment for your son. The better your own understanding of CF the more able you will be to support him throughout his life. So do educate yourself as much as possible.

As he gets a bit older you will need to explain it to him so that he too understands the illness and why he must follow the treatment regime regarding physiotherapy and monitoring his enzymes. Always show him that you are willing to discuss any aspect of it with him.

When it comes to day-to-day life I am sure that your son will be able to participate as fully as other children in many activities. If you focus with him on the things that he is able to do, rather than things he is not able to do, it will support him in having a more positive outlook on life and on what is achievable.

I do think that one of the most important things that you can do is to continue to spend time as a couple, and as an individual, thinking and talking about what his illness means for you.

Trying to come to terms with the fact that his life won't be the same as other children is a big deal. It means accepting that he is different and acknowledging the disappointment, grief or loss you may feel about whatever expectations of normality you had anticipated before his birth.

As he is your first baby, then you are creating your own version of normality. All parents will tell you that adjusting to being a parent means letting go of some of the expectations they had pre-birth and there is not one of us who could have imagined what life with a baby, regardless of health, would be truly like.

At his age it is hard not to spoil him, though you do need to set limits for him as he gets a bit older. There are certain things that he will be allowed to do and not allowed to do and you still need to determine what they are and make sure he learns the rules of the house.

It might be tempting to try to compensate for some of the complexity or distress that he might experience by being too lenient or laissez-faire with him. This won't help him in the long term. Nor will it help him to do everything for him. Cherishing him involves seeing him as special and deserving of your love and attention. This won't spoil him. Indeed, I believe that all parents probably aspire to cherishing their children every day.

Sometimes it is easy to lose sight of just how special each of our children is; we can easily take them for granted. Perhaps because your son has CF you may remain a little more aware and conscious of what he contributes to your family.

As with all children, you can consider giving him small amounts of responsibility in the house from when he is young. So you can expect him to carry his dish from the table to the dishwasher, or to stand up beside you and help with the cooking, or with loading the washing machine.

I have long been an advocate of parents focusing on minding themselves as well as minding their children. Indeed when we take care of our energy reserves, regulate our feelings, eat well, rest and look after our own needs we will always be better able to meet the needs of our children.

So do look after yourself, because it can be stressful coping with a child with a chronic illness.

If at any point you don't feel you are handling the stress of his illness then it is more likely that he too will have problems coping.

I think it might really help to make contact with other parents of children with CF. This might help you to feel like your life is as normal as any other family's life when they are dealing with a child with CF.

It may also help you to anticipate and prepare for some of the challenges ahead as he moves out into the world a bit more, and away from your direct care all the time. Any chronic illness is a challenge for a family. Helpfully for yourself, you are already thinking about and planning for what you and your son will need. He will always have CF and he will always be your son, but in time he will grow out of childhood and move into an independent adulthood.

Facilitating this growth and development is a challenge every parent will face.

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