Ros is the proud parent of Lara who has cystic fibrosis (CF) and is now 19-years old. Ros shares some of her experiences of parenting through the teen years.
What was challenging and rewarding through the high school years?
Lara has always been very compliant to treatment with few exacerbations. She never hid CF. As parents, we were very open about CF, putting into context how we’re all different, like having red hair. The school needed to know, and it worked well as her dance teacher got extra time. Lara always felt fine about taking enzymes in front of her friends.
In Year 10 Lara was diagnosed with non-tuberculosis mycobacterium; this was very challenging as she was on a long dose of very powerful antibiotics, however, she was always very positive. A doctor once told me: “you get on with being her mum, we will be the doctors and do the worrying”. We had full confidence in the team to manage her treatment.
This took the burden of choice away and Lara always felt included in decisions. Lara is a very talented dancer. There was a time when it seemed that her exacerbations always seemed to coincide with an important event, such as a dancing performance, which was very challenging. Lara would still go to school to do her IVs, but the dancing was just a bit too difficult with an IV. Most of the time CF has not been an issue. We’ve always a had a good routine with physio before school. Because she’s so busy I would help her organise this; get her nebs ready and then clean it up.
There have been some rewards. Lara knows about ill health; she has a lot of empathy towards other people and she is a deeper and more sensitive person. She developed good relationships with her hospital team and loved hospital. She got a lot of attention and was taken seriously. I feel this increased her confidence and ability to talk to adults and a more professional approach to things e.g. leadership qualities as she was forced to make decisions around her health and wellbeing.
What did you find most helpful during this time?
Lara’s attitude was most helpful. I was lucky she has always been focused on doing her treatment. She has a strong friendship group who would also visit her in hospital and a positive school environment.
She also had goals. She wanted to be a nurse. She chose things that she was interested in, paced her study and set a realistic routine. Managing stress is important. Lara went to see the school counsellor. She reinforced much of what we were already saying, but it was another voice and another support; it helped her to build resilience.
My other advice is to not make too big a deal of everything. Be calm, be a sounding board, be present and be reassuring. Find something to look forward to after exams or something else that is stressful. We use humour to diffuse stressful situations.
What advice would you give to other parents and carers?
In clinic we used to write everything down. Lara now photographs all her notes or records them electronically. Learn to be your own best advocate. For a parent it’s hard to let go, but so important to encourage your children to speak up and learn these skills.
We’ve always stayed positive, not told her too much but focussed on the new positive treatments. Don’t google and use positive role models.
Faith for me has been important. The most important thing for me is the way you live life, not the length of it. Contact with other parents has been essential; it helped me to feel connected. I’m still part of a parent’s group and this set of parents are the only ones that really understand what you’re going through. To have people you can call and get a break for yourself makes all the difference.
Article from RED Magazine, Edition 1 2020.