On top of this diagnosis and recovering after the birth, you’re generally dealing with sleep deprivation, a change in routines and, for mothers, a change in hormones and emotions
Feelings of loss and grief
Although you may well have a very happy baby, you still might feel a sense of loss. This grief can be a significant part of adapting to the diagnosis, and can include:
- Loss of the healthy baby you imagined
- Loss of an imagined future/having grandchildren
- Loss of your career or a change in status
- Loss of time for yourself
- The anticipated loss of your child
This sense of grief can affect you emotionally and physically, disrupting sleep and eating habits, and causing other physical symptoms. Most parents feel this grief intensely during the first few months, but say that it lessens or resolves when they see their baby developing normally.
Most parents feel this grief intensely during the first few months, but say that it lessens
Feelings of guilt
As well as the common feelings of loss, you may also feel a sense of guilt because of the hereditary nature of cystic fibrosis. This can lead to a very confused array of emotions.
You might feel a sense of guilt that you and your partner have “done” this to your child. However, blaming yourself for your child’s illness can often lead to difficulties with attachment and emotional adjustment.
Grief: a normal reaction
Everyone’s experience of grief and loss is different – you might experience all kinds of difficult emotions, or wonder if this sadness will ever end. This is a normal reaction to loss. There is no right or wrong way to grieve, and it is important to process and share this emotion to help you continue to connect with your child and enjoy them as the beautiful and happy baby they are.
Grief can affect your emotions, your thoughts, your behaviours, your self-image, your physical health and your relationships. Grief is cyclical and can be unpredictable – sometimes it can be triggered in unexpected ways. It can come and go in waves, leaving you feeling unable to connect with the moment or concentrate.
Many parents describe feeling that they have adapted, but then another wave of grief can crash over them when their child needs to go back to hospital.
How to grieve
- Grieve your way. No one can tell you how to feel.
- Understand that grief takes time. You’ll sometimes be surprised by how you’re feeling.
- Share your feelings with someone you trust, and don’t be afraid to show your emotions.
- Be aware that difficult events, like going back to the hospital, may set off memories and sadness and anxiety.
- Tell people who offer to help exactly what you need – a shoulder to cry on, a helping hand with the children or making meals. Don’t be afraid to ask for help or accept it as it comes.
If your grief feels too much to bear, explore options for professional help to work through intense emotions and overcome obstacles to grieving. Visit beyondblue at https://www.beyondblue.org.au or phone 1300 22 4636.
Learning to live with grief
Take one step at a time.
Look after your physical wellbeing. Eat a healthy diet, exercise and sleep when you can
Take time out to do things you enjoy, even if you don’t really feel like it.
Focus on your favourite parts of your baby, and appreciate the moments of fun.
Try relaxation or meditation to help to manage stress and difficult emotions.
Approach any drug and alcohol use with caution. These can numb your feelings, but also make healing more difficult.
Avoid making big decisions about work/family/housing situations right now. Wanting to make changes immediately isn’t unusual, but you might not be thinking clearly. It’s often better to wait until you have a better handle on CF and your baby.
Helplessness: it’s very natural
The unpredictability of CF might cause you to feel helpless, as though an uncertain future is unfolding before you. This helpless feeling is common and very natural, and one that many parents find difficult to move past at different times.
Focusing on what you can control, and accepting that some things in life are not under your control, often help resolve this feeling of helplessness.
Focusing on what you can control, and accepting that some things in life are not under your control, often helps
Adjustment: a mother looks back
Being told that your child has cystic fibrosis is never easy but, in time, you can adjust, as one mum explains.
“There are so many adjustments that need to be made to your life as you begin to wrap your head around a diagnosis like this. I remember… feeling like someone pushed me off a plane in some foreign nation without a guidebook or a translation dictionary. I was standing still watching everything go on around me and I understood only a small fraction of what it all meant.
“Over time, I adjusted… You learn the language of the land and the landscape, you accept the hours of treatments. You learn strategies for getting an eight-month-old to take a nebuliser treatment or a 15-month-old to swallow pills.
“You create a new normal, and the foreign language that sounded like gobbledegook starts to be a part of your vocabulary.”
Research suggests that more than one-third of parents [of a child with CF] have clinically significant levels of anxiety
Fear & worry: you’re not alone
Many parents of a child with CF describe high levels of anxiety, and research suggests that more than one-third of parents have clinically significant levels of anxiety. You might fear many things – from germs and the first exacerbation, to how you’ll cope with the road ahead.
Some parents develop symptoms similar to those of post-traumatic stress disorder as a reaction to the diagnosis or the procedures they have seen their child endure and what these events might signify. It’s a good idea to talk through such events with a counsellor (or a friend) who might help you attach alternative or additional meanings to what you experienced.
Click on Getting Support if you, your partner or anyone else in your family is experiencing anxiety, depression or any other mental health issue. You’ll find a list of helpful resources.
