Why do I identify as a caregiver instead of parent of special needs child, or parent of medically complex child or other parental designation? Because I am not just a parent. That would imply an overview of the role I play but it does not describe me in an authentic way. I’m a revolutionary, a risk taker, a troublemaker, ARD conqueror, inquisitor of doctors, purveyor of alternative remedies and wise woman who sees through the bullshit in an instant. I am these things. These things are me.
Trigger warning: Descriptions of descent into despair and coming back to follow.
Below you will find a description of despair and how I felt and processed despair. I share this with you because as a long-time caregiver, I can fall into what I call zombie affect, flat affect where I get numb and emotionless.
It’s caused by continual stress and by necessity pushing through. As a caregiver, we do what we must but it is important when you can, in ways that work for you, to actually feel the feelings. At first, I had to make myself feel because I had gotten so numb that I didn’t even know how I felt. I’ve learned that when I feel the feelings that I’m having, it somehow brings me back to life. Remember the feeling after a good cry? Ah, that’s what I’m talking about.
I’m posting this here to share with you, hopefully, as encouragement and if you aren’t ready to do it yourself, maybe you can do it vicariously through me, ya know, like we do with movies.
Below, I have posted a mp3 file of this post, it contains the gist but isn’t a word for word reading. I thought I would do this because, honestly, sometimes when I sit to read, I fall asleep.
Power of Paradox
I live in the depths of the continual lessons that I am forced to embrace in the moment. I have the battle scars and echoes ringing in my head from many midnights of heart howling crying out to the moon from the depths of my being. Demanding of the universe, my creator, and any who could stand my wretched presence, to understand the meaning of the disgustingly evil things called seizures, autism, cancer, too many horrid monsters to name. I stand and scream in their face…what is your purpose, why are you here, why me and those that I love? What is your true name, what is your lesson for me, for us? To my heartbreak and shame, I have learned that I may never understand why and as much as I try, I cannot banish these monsters from my life or the life of those that I love.
For the wise woman, bloody knuckled crusty old hag within me has taught me that if I do not honor and release those emotions, they will rob me of my power. So I must rely on the paradox as my source of power. You see, what I’m talking about is the tension that is living in this time in this place in this pitiful and unlucky and if I hear one more time, “God wouldn’t give you more than you can bear” words uttered.
No, these are the monsters that I must dance with, that I
must forever work within the limits of, and not against.
I must integrate the heartache, pain that they bring into my life. If I want to give care to the one I love, I will not fight against, hold onto, deny, or minimize the feelings and emotions emanating from them but I will integrate the lessons taught by these gruesome teachers.
Oh, how I wish that it were not the case but old hag that I am, I have finally learned that like my ancestors before me, I must learn to dance with these horrid beasts and meet their ferocious roar with the same that I am met with; but oh child, I am not alone. I call upon my creator and the cosmos, I draw upon the energy of the earth beneath my feet and summon from within myself what is needed to meet the moment. Yes, this is the most potent moment of power.
So, I will not deplete myself and my energy resources working against the truth of my situation.
I return with the same ferocious force that these monsters hurl at me. By bending these forces and using their own momentum to hurl back at them, through forceful release, I am I able to give care to my doodlebug without depleting my own resources. What does this look like, you ask? I sit with them, these thoughts of fear. I acknowledge them, these sharp stinging pains in my heart, then I sit with them, feel them, honoring them until finally, I can release them. Then, I was the dishes.
I smile a knowing and sly grin because I know it’s coming.
The power that comes the moment that I am the lucky beneficiary of the ‘best hug ever’ that epic cataclysmic moment my son looks at me and smiles a whole-body smile, he gives me the ‘best hug ever’, you see his hugs are magic. Each one is better than the last.
If only I can be watchful as the clever fox and catch that moment and sit with it and cherish it, I have experienced the power of my paradox. The present moment. The present moment free from the heaviness of the past and unhindered by fears of the future, there sweet one is the power, the power of paradox. Navigating the tension between moments and having the wisdom to gulp every drop of love and joy as it runs down into my heart, that is my power in my paradox.
I savor these moments and I feel them with all my senses because it is here that I am slayer, I am victor, I am caregiver of my most precious one. Here, I have the ability transform disability, disease, and grief into power, this is the power of paradox. The potent power of the moment. You see, it is true, to the same measure of your despair is met by the measure of your joy and bliss, if you are brave enough to look for it and to heathen enough to grab it with all gusto and wise enough to be satiated when you find it, even if only for a moment. It is there, it is there, it is there.
Be a collector of Power by keeping a list of your powerful paradox moments. The moments of joy that come along. The treasures and little moments of precious connection that is indescribable, write them down, and take them out and review and savor the power in them. Do this to build your resilience and keep it as a tool. When you review your journal you will begin to feel the power stirring in your heart, do it, take in the nourishment of your powerful caregiving moments.
They are there, they are there, they are there.
Do you see them? If you would like, share your power in the paradox moment in the comment section below. You are safe here.