Thinking back to a social media post I shared about being a mom
and all of the duties that come with that title. The post was about all of my
day to day duties and everything that goes into raising and caring for my
daughter who has significant special health care needs. I thought about how I,
as her mom, complete daily tasks that several professionals would do
individually in another setting. Examples: nursing to handle medicines and tube
feedings; respiratory therapist to handle breathing treatments, suction, cough
assist and chest percussion therapies; a physical or occupational therapist
would handle stretches, massages, and other movements that help with muscle tone
and spasticity, her scheduler managing numerous appointments to doctors and
specialists. Those are just the medical side. She still needs the things that
all human beings need and want: shelter, cleanliness, entertainment and most of
all love.
When you are a single parent and doing all of those things daily; just
being her mom gets lost! I find myself “on the clock” more than ever. It all
seems to be heightened since living through a pandemic for almost two years now.
There is no escape from or break in the daily routine. No days to sneak away to
the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying
people watching and listening while browsing the clothing and accessories. Yes,
her momma got to enjoy the treat of a Frappuccino from Starbucks and checking
out the clearance endcaps. Those things are so dearly missed as we continue in
our pursuit of keeping a young lady who has multiple disabilities, one being
Restricted Lung Disease (RLD) safe and as healthy as possible.
Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with
barely any break in the cyclical nature of each day. We are not going many
places, as I mentioned earlier, to break the pattern often besides doctor
appointments, drug store runs and grocery drive ups. There are no vacations or
holidays. Even on those days, you, mom-caregiver are always “on the clock”. We
are not making visits to the homes of family or friends and there are rarely
visitors to our home, for the obvious safety and health concerns. The things we
are doing for “fun” still keep us safe at home: new movies when they are
available to stream or yard meet-ups with family when the weather is nice and
health permits.
Just be her mom? In order to do that safely, effectively, and
efficiently, mom has to think of herself as well. The things that I do to pamper
and comfort my daughter are some of the very things that I need for myself. This
is why self-care, self-love and mental outlets are so critically important. As
parents of children with special health care and disabilities, we are often
reminded of the quote, “You cannot pour from an empty cup.” There are so many
days when we are on our hamster wheel, running on fumes and seemingly going
nowhere, we must remember that in order to be top notch we have to me caring and
considerate of our own well-being.
The act of looking after the care of another who is either sick of disabled is
“caregiving”. While providing care for my daughter is expected and required,
doing it non-stop and as a single parent can be tasking. Exhaustion is real and
it is not just physical. Burnout can set in and cause a parent/caregiver to be
less alert. This weariness can potentially be harmful for the person we are
caring for when their needs are not met in the proper manner.
Just be her mom
means that I am taking care of myself. Yes, enjoying the journey of growing
knowledge of what it takes to care for my daughter and all of her needs.
Advocating for her care, health, inclusion, rights and more. In doing all of
those things for her, I have to do them for myself as well. Take breaks, read
some fiction, stream a series or two, get outside to look up at the sky, feel
the breeze and the sun on your face, grab that macchiato or latte or
Frappuccino. Do something you love! Talk to someone, professional, if you feel
that is what you need. Take care of YOU, holistically. Keep that quote, close to
your heart and in memory; keep your cup as full as possible, that is the best
way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..
