From mama to medical mom

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!!!