 The thing about "self care", or centering wellness, as a caregiver is you cannot wait until "everything else is done" - because the hard truth of being a caregiver of a child living with a serious medical condition is that you will never get "it" all done. Not even the list of the most pressing priorities can be accomplished. Our system is not designed to provide the levels of support required for families to really manage these situations in a way that lets "it" all get done. I actually don't like the term "self care" I prefer "centering wellness". The reason being there are complex social, economic, and political forces that impact caregiver wellness - and remediating the impacts of collective action (or lack thereof) is not a DIY activity (AKA; "self care"). I am fan of squad care, mutual aid, and peer support. I didn't plan on being the caregiver to a kid living with a life limiting illness - (yikes!) - but it happened. Things are still hard, because 'wow' what an identity shift no one ever wanted to have - from mom to medical mom!! And because my daughter is still very and complexly ill. This is my second run with the sick kid thing. Years ago today- my oldest daughter (then nine years old) entered a clinical dosing trial testing for the first time a newly developed drug on children whose livers were failing - I had thought once she as cured - being a caregiver of medically complex kids was going to be in the rearview mirror. But the fates had different plans. We are now more than a decade into her sister living with a complex, wellness robbing illness that requires palliative care. Unfortunately, I learned the hard way what happens when the caregiver doesn't take care of herself. I caught whooping cough (Yes, I did have the vaccine by the way - as the mom of medically fragile kids its important to me that I don't transmit preventable communicable diseases) and I got really really sick. As the only parent for our family, I had a frightening preview of what could happen to us all were I not well enough to care for my family. At that time, I was not mindful nor as intentional about nurturing myself beyond my usual workout and meditation practice. That illness ended up being an opportunity - a wake up call to create a "care map and plan" not just for my sick child, but for every single one of us in our family- even the dog!!!
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Eat the cake first - sweetness in the bitter I have a kid living with a rare, often debilitating and complex medical illness. On our journey, I have gotten a lot of advice - some of it good and some of it, let's just say well-intentioned.
One of my favorite pieces of advice has been to let my daughter "Eat The Cake First". Simple , brilliant, and effective - guaranteed to preserve the magic of childhood. I used to wait until after dinner was done, gifts were opened, etc. to break out the cake. Often my kids were too sick or tired to eat the cake and we never got to it. Now we literally eat the cake first. Just for the record - I am not by nature an optimist - nor temperamentally grateful. I am bit prone to overthinking and anxiety - so having both my kids get sick really rocked my world view. I am also a problem solver and a minimizer so it took me awhile to realize that my life, and my identity, were about to undergo a profound and permanent transformation. I didn't, and don't, ask "why?" as much as "how?" am I going to manage. In talking with other caregivers, I realize that there are some shared experiences and practices that have been part of our journeys in accepting that we, and our children, are going to live with illness and all that goes with it for the foreseeable future. It took me, and others, awhile to:
Bit by bit and day by day things changed - and one day we could not remember a time where we did not eat the cake first. |
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