It really does take a village: Guest Post
I am a mom. I love my children unconditionally. When they are joyful I am joyful. When they struggle, I struggle...and then I try to fix it, just like most parents.
Over the last year, I have been taught a life lesson that sometimes knocks me on my butt.
I can’t fix my daughters life after a brain bleed! I can’t lesson her daily struggles with a laundry list of changing symptoms that would bring me to my knees. I can’t change the fact that her life has been turned upside down and inside out. I don’t have the words to comfort her, to tell her that this too will pass and life will return to “normal”. It won’t for her or my husband and I or her siblings.
We are her caregivers but also her parents.
We research and try to find answers. We try to maneuver through a medical system in which she doesn’t fit. The cavernomas in her brain, their bleeds and consequent additional complications don’t fit into the check boxes that doctors use to diagnose, prescribe, and cure. They sympathize and offer medications that can ease symptoms but--like me--they know they can’t “fix” this.
I teach yoga, I meditate, and I use essential oils. Juju hippie crap as a friend's son says. I realized recently that I can’t just go through the motions of this juju. I have to live in the moment. I needed to learn that while I can’t fix my daughter, I can be present with her, I can be there, hold her hand, help her maneuver through this new “normal” that is her life and ours.
I told her one day that I wish I could take away all the symptoms from her for a day, and she replied that it would probably fall on a day that she felt decent! She still has an amazing sense of humor and wit, that keeps us all positive, or in her words “pumping up the jam”.
My daughter teaches me everyday about what it is to live in the moment, appreciate the littlest of victories, and show gratitude to those around her. Sometimes it feels like Groundhog Day because routine is vital to her comfort level both physically and emotionally. For me, I want to come down to her place just one morning and have her feel great, have her want to go out, see friends, get some exercise, shop, and play without the cloud of impending nausea, dizziness etc, moving in and raining on her parade!
It is national caregiver month. If you are the dependent (the one who needs a caregiver) be grateful and try to be patient & understanding that we are doing our best, each and every day. We understand that this sucks for you, that independence lost is hard to grapple with. But developing and adding the "team" mentality is so important for both of you.
The realization that this is out of my control has been my biggest struggle.
This is what I can control:
- I can lean in more, ask for more help from family and friends.
- I can advocate for her best care and comfort.
- I can take care of myself so that I have strength and energy to support her, not “fix” her.
After all, she doesn’t need to be fixed; she needs to be supported, loved, and understood.
This poem from Rumi has always resonated with me even before my daughters illness.
“This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whomever comes,
because each has been sent
as a guide from beyond.”
