Coming Soon -
Caregivers need care too ...
LEARN FROM EXPERTS - PARENTS AND PROVIDERS
From something as simple as taking time to focus on your next breath to creating a circle of support for you (yes! you the caregiver) its important to realize caregiving is like any role - its easier if you are intentional about it.
Just as you nourish your child and family's mind, body, and spirit - the same goes for you. I know, it can feel like an "extra" thing - but its really not at all. Self care as a caregiver is not only essential for our wellbeing - it also models really important approaches to dealing with tough times for our kids, families, and communities.
Just as you nourish your child and family's mind, body, and spirit - the same goes for you. I know, it can feel like an "extra" thing - but its really not at all. Self care as a caregiver is not only essential for our wellbeing - it also models really important approaches to dealing with tough times for our kids, families, and communities.
Self Care Essentials....
CAREGIVER SELF CARE 101
The thing about "self care" 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 pressing priorities. Our system is just 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 didn't plan on being the caregiver to a sick kid - (yikes!) - but it happened. Things are still hard, because 'wow' what an idenity shift no one ever wanted to have!! and because my daughter is still very and complexly ill. This is my second run with the sick kid thing. A year 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. I was not mindful nor as intentional about nurturing myself beyond my usual workout and meditation practice.
Unfortunately, I learned the hardway 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 diseaseses) 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. 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!!!
I didn't plan on being the caregiver to a sick kid - (yikes!) - but it happened. Things are still hard, because 'wow' what an idenity shift no one ever wanted to have!! and because my daughter is still very and complexly ill. This is my second run with the sick kid thing. A year 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. I was not mindful nor as intentional about nurturing myself beyond my usual workout and meditation practice.
Unfortunately, I learned the hardway 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 diseaseses) 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. 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!!!
What Does Caregiving the Caregiver Even Look Like?
CARE MAPS, CUPCAKES, AND COMMUNITY - NUTS AND BOLTS IDEAS FOR SELF CARE & WHAT THE RESEARCH CAN TEACH US
So when my second daughter's health took a rapid and frightening decline - I had more intention and capacity to figure out the whole "caring for the caregiver thing". Because as our family had more sickness in it, the demands on me as a caregiver grew. But this time, I had a plan on how to take care of myself. It is a plan that I can share with others; from friend and doctors, to teachers and babysitters.
Its still super crummy being the mom-advocate of a second medically complex and chronically ill kid. but it has gotten easier by becoming very intentional and mindful that I am, in fact, for better or for for worse - the caregiver to a child with a complex and serious medical condition.
And that role demands special things from me - in order to meet those demands I have learned to find refuge in the moments set aside to care for my mind, body, and spirit. Whether its a long winter swim in the rain, yoga breathing in the car between appointments, taking the time to make a beautiful salad, or squeezing in a cup of tea with a friend or colleague - moments of self care are essential.
Its still super crummy being the mom-advocate of a second medically complex and chronically ill kid. but it has gotten easier by becoming very intentional and mindful that I am, in fact, for better or for for worse - the caregiver to a child with a complex and serious medical condition.
And that role demands special things from me - in order to meet those demands I have learned to find refuge in the moments set aside to care for my mind, body, and spirit. Whether its a long winter swim in the rain, yoga breathing in the car between appointments, taking the time to make a beautiful salad, or squeezing in a cup of tea with a friend or colleague - moments of self care are essential.
Starting Self Care - "Beginner's Mind"
SOMETIMES ALL YOU CAN CONTROL IS YOUR NEXT BREATH....
Self care is a set up - we need to care for ourselves within an ecology of care. Its a myth that with enough "selfcare" it will all be OK. Collective care, #squadcare, and honoring that we are part of an ecosystem of that has the capacity to care - is a profound and critical act.
Sure- there are things to avoid - like self-medicating with harmful things like alcohol, spiraling into clinical depression, etc. -- but if that happens be get help, learn from it, and, did I mention, get help? Seriously, there is no "playbook" for parenting a medically fragile kid and it is really hard.
There are things that science shows can and do help build resilience and promote happiness even when the worse happens. I look forward to sharing those here.
Until then - be really kind to yourself. It may help to take moment to just focus on the next breath you take... focus on how it feels to draw that breath in and to feel what happens as you gently exhale...
Sometimes, when things are really bad or scary or overwhelming - it helps me to remember that hard moments are comprised of breaths and seconds - and I sometimes remind myself that I just need to get through this "next breath". Because honestly, even in urgent care situation and emergency rooms - with rare exception there is enough time to do a "time out" and focus on a few deep breaths.
Please check back for some practical tips and links to resources for caregivers - or shoot me an email with your ideas.
Sure- there are things to avoid - like self-medicating with harmful things like alcohol, spiraling into clinical depression, etc. -- but if that happens be get help, learn from it, and, did I mention, get help? Seriously, there is no "playbook" for parenting a medically fragile kid and it is really hard.
There are things that science shows can and do help build resilience and promote happiness even when the worse happens. I look forward to sharing those here.
Until then - be really kind to yourself. It may help to take moment to just focus on the next breath you take... focus on how it feels to draw that breath in and to feel what happens as you gently exhale...
Sometimes, when things are really bad or scary or overwhelming - it helps me to remember that hard moments are comprised of breaths and seconds - and I sometimes remind myself that I just need to get through this "next breath". Because honestly, even in urgent care situation and emergency rooms - with rare exception there is enough time to do a "time out" and focus on a few deep breaths.
Please check back for some practical tips and links to resources for caregivers - or shoot me an email with your ideas.