Parents develop numerous strategies to help their children through sometimes painful and frightening procedures. This interview with Helen looks at her journey with her daughter Asha.
When did you first notice anxiety with Asha?
She was an easy baby, when she became a toddler around 2-3 yrs she would become upset easily, particularly around physio. It was difficult for her to sit through a session and difficult for her to understand why she had to do it. Having a home care worker made a big difference as he was able to give me a break and take the focus off me being the tough parent.
What is hospital like for Asha?
Being in hospital is always great. The nurses are outstanding and we have a lot of positive time together. To make the stay more comfortable I take bed linen, a craft box, fairy dresses, DVD stories, lavender oil, nature CDs, her cuddle toy and a pillow pet which lights up the ceiling with stars.
How does Asha feeling about getting hospital procedures?
There is a direct correlation between Asha’s anxiety and hospital procedures. As she has gotten older we have noticed that after particular hospital interventions she is more stressed at home, won’t go to the toilet at night by herself, has occasional nightmares, withdrawn at school and has lowered self esteem.
Is anything helping with this?
On our last visit to hospital Asha was in the theatre room getting IVs. She had her eyes closed and seemed to be shutting everyone out. I asked her “what are you doing”, she said “I’m doing my yoga breathing”. This seems to be a really big step forward. Asha has been doing yoga now for over six months which I believe is helping reconnect her with her body and feel more in control. I think that most of her anxiety is about the anticipation of a procedure, so putting time and thought into preparing for this is very helpful.
I work with the doctors and nurses to calmly discuss what’s happening. Asha and I have worked with the PMH psychologist using distraction coaching to help keep Asha in a relaxed state, both before and during the procedure. Being there afterward is especially useful to comfort her. This is when I use lavender oil and nature music to take her to a safe place. All procedures are also done away from her room to keep them separate.
We try not to take this anxiety home with us and have been thinking about transition rituals such as going to the beach, releasing a balloon or having a nice meal as a means of keeping the anxiety separate.
How does Asha feel about having CF?
Asha is proud to have CF. I asked her recently “If you had your way again would you want to have CF”? She replied “Yes absolutely”. She is happy to be unique.
Anything else you would like to say?
I try to absorb myself in my child’s awesomeness, so that when things get bad I have those memories to draw from. My biggest lesson; CF does not define my child.
Article from RED Magazine, Winter 2013.