Summer turned 13 years at the end of 2021 and the reality of it all really hit me. What I mean is that I’ve got a little over one decade of caregiving under my belt, and there are many, many more to come. Gulp….my mind flashes forward to all of the decades ahead of us — and that is why my well being is so important to me.
The permanence of the role as caregiver sometimes feels as if it's just setting in — even after 13 years of doing it on a daily basis. You see, because 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.
All I know is that daily life can still feel challenging and while we are experiencing wins and progress — new behaviours 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 it all really hits home and reminds me why I need to stay physically and mentally strong. There is a fine line/consideration when having this delicate discussion 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? How do I commit to taking care of myself without going down the rabbit hole of all of the “what ifs”.
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 at the start of this new year and celebrating the milestone of my baby girl turning 13 while celebrating all of 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.
At that time, 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 now 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.