As part of our mental health initiative, led by our Patient Advocacy and Engagement (PAE) team, we welcome guest blogger Nicole Duaz to talk about her experiences. Nicole is mother to Summer, who has a rare genetic disease and autism, and a self-care coach. Here she discusses her daughter turning 13 and the reality of being a caregiver.
Reality Check of a 13th Birthday
When my daughter Summer turned 13 years old, the reality of my situation really hit me. I’ve got just over one decade of caregiving under my belt, and there are many, many more to come. Gulp….my mind flashes forward to all the decades ahead of us — and that is why my wellbeing is so important to me.
Despite the permanence of the role as caregiver, it’s not something you get used to — even after 13 years of doing it on a daily basis. You see, our kids don’t come with manuals — and because Summer has a rare genetic disease and autism, I don’t even have benchmarks and progress points for her so it’s difficult to know what to expect.
All I know is that daily life can still feel challenging and while we are experiencing wins and progress, new behaviours also appear. This is coupled with Summer growing taller and stronger. I still bathe her, wash her hair, brush it and remove the tangles. I still cut her nails, etc. These activities get more and more challenging the older she gets as sometimes she’s not in the mood and will resist.
The reality of my situation reminds me why I need to stay physically and mentally strong.
This is a delicate discussion to have as it is an emotional one. How do we think about the future without getting overwhelmed? Are we able to focus on only those things that we can control? Even when there’s so much uncertainty? And how do I commit to taking care of myself without going down the rabbit hole of all the “what ifs”?
Worrying about the unknown
Personally, my default is to worry. It takes a conscious effort to stay positive and believe that everything will work out. I stay positive because I know that it will have the best pay off down the road. I know that I have no control over the future and therefore, worrying about something over which I have no control could drive me crazy (it certainly has in the past).
So, when celebrating the milestone of my baby girl turning 13, while celebrating all the progress that she has made — especially over the last few years — I was surprised when these feelings of worry and uncertainty appeared out of nowhere.
I reminded myself that I have two choices: to choose happiness or choose unhappiness. While choosing happiness is not always the easiest path, I know that it is the path that I want to be on. I imagine that this is relatable for all caregivers. Give yourself grace and compassion during these times.
Mental health in the rare disease community
Congenica recently collaborated with Gene People, Rareminds CIC, UCL Great Ormond Street Institute of Child Health and Addenbrooke’s Hospital to highlight the mental health and wellbeing issues in the rare disease community today. Read their response to the UK Government’s open consultation to support mental health and wellbeing.