Adapting and adjusting

“I remember those first few weeks, months, year just thinking, ‘will life ever feel normal again?’ and of course it does, eventually.”

Following your child’s injury, you might have noticed that you and your family went through a process of adapting or adjusting and becoming used to the new situation. This section describes parents’ feelings of loss and grief, and the challenges and changes they faced after their child’s injury. It also offers some examples of how people can sometimes find positive aspects arising from what is a challenging situation.

Each individual and every family is different - you may have experienced some, none, or all of these feelings. Increasing your awareness of your physical and mental experiences (how your body is feeling, your thoughts, emotions and behaviour) can help you to manage any difficult feelings that may have arisen following the injury.

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Many parents who contributed to this resource reported feelings of loss when their child was injured. Initially, some parents were fearful that they would lose their child; either that they might die or be taken from them by social services.

“I was very scared that she was going to get, in some way, taken away from me, either because she was going to die of shock or injury or someone was going to come along and say ‘You’re an unfit mother’.”

These fears could also occur for parents if there were medical complications in their child’s treatment.

Parents also experienced loss and sadness with the realisation that their child’s injury would lead to lifelong scarring. Scarring can act as a reminder for parents of the day their child was injured and what could have, perhaps, been done differently.

“Every time I see it … it kind of brings back the whole: ‘if I’d done something differently, this might not have happened’.”

It is common for parents to feel as though their child’s injury happened because, for a split second, they were not protecting them as they think they should have been. As a parent, feeling as though you have failed to protect your child can lead to guilt and shame.

You may have felt, or still feel, as though you are searching for what you had before the burn injury, and ways to undo what happened to your child. For example, this might result in you pursuing further surgery in an attempt to undo the damage that was done.

“I do everything I can to try and reduce the scars. Some of the surgery she’s had was purely cosmetic.”

After a burn injury, some things can never be the same as before, but some changes may only be temporary. Regardless of the duration of the change experienced, it can be difficult for parents to manage them. At the moment, you may be having to balance work (or you might have had to do this in the past, or may have to do it in the future) with frequent hospital visits and the care needs of other children, alongside looking after your home, caring for your injured child and managing your personal relationships.

“Trying to balance working full-time, looking after the family and his on-going medical needs… the intensity of the level of care he needed was pretty much a full-time job. The absolute hands-on care of a child coming out of a severe burns injury was just immense.”

Since your child’s injury, you may feel as though everything has changed, or the life that you had before has been lost, and these feelings can affect your family life, social life and relationship. You may even have recognised your experience as grief.

“We never had friends over, saw friends, went out for dinner, had people round for dinner. They just didn't … it wasn't a normal life anymore.”

Because of what has happened, some parents worry that they are unable to spend as much time with their other non-injured children, or feel that they “spoil” or are “softer” on the child who was injured. Parents can also become very wary of danger and over-protective of their children because of their desire to prevent any future injuries.

These thoughts, feelings and behaviours can lead to increased stress. It makes sense that you might feel very safety conscious since your child’s injury but this can cause tension between siblings and within your relationship. You can read more about supporting siblings here and the impact of a burn on your relationship here.

“You won’t walk into a room and just ‘walk into a room’. You walk into a room and see 50 things that could go wrong.”

From an evolutionary point of view, it is important for our survival to try to avoid threatening situations and only approach those that we want to. In the past, when we were faced with a threat, we needed to react by fighting or running - these reactions were essential for our survival and why we have the ‘fight or flight response’. However, our brain cannot tell the difference between what is external threat (danger in the environment) and internal threat (feelings of fear, guilt or shame) and so it sets off the same fight or flight response to negative thoughts and feelings, worsening the feelings of stress.

“It might have defined them, but it has defined them for something positive!”

Following a burn injury, some people report that there have been positive aspects amongst the difficult times and challenges they have faced.

“They don’t want to change things, it was horrible but it does get easier.”

Research has shown that there can be positive changes in the way people view themselves following a burn injury or other traumas. For example, there can be a sense of personal strength, enhanced relationships, and changes to their outlook on life.

“My daughter says it’s made her a stronger person.”

There have also been studies reporting that burns survivors can have more favourable outcomes than people who have not had a burn injury in terms of better body image, mood, and general quality of life.

“It’s made him who he is, a very caring, very sensitive young man. He wants to support everybody.”

Read more about this in the section about your child, their scars, and the future.

What can I do that might help?

When it feels as though everything is different or has changed, it is important to remember and hold on to what is still the same and has not changed. You might notice, when you really think about it, that the most important things have not really changed at all.

Going forward, it is important to focus on and invest effort into new things. But remember, there is no “should” in how it feels to do this.

Are there activities that you can do as a family?

Are there things that you want to do for yourself?

We are often unable to change external events but we do have control over what happens internally (for example, our thoughts and feelings). Much of our internal stress results from how we react to things.

It is important to remember that we tend to react to unpleasant and difficult situations automatically. Reactions might include being angry, blaming someone, or blanking out what has happened. These unconscious reactions add to our stress.

Mindfulness can help by teaching us to learn to respond consciously to adversity. This can reduce the build-up of stress.