I feel as if I am slowly getting my feet about me, what a journey I have been on for the past 5 months with my daughter. No closer to answers to her condition, no course of treatment or what ever it may be to get her back to where she once was.
Long are the days of my fit equestrian that rode 7 days a week to now being bed ridden, unable to escape the pain in her head and the lack of balance once she is up which prevents the simplest tasks about the horses. She has lost her bearings.
Her situation is like murky waters in my best opinion, there is not enough clarity and so we continue to travel, advocate and seek what we can to help better understand what is going on for her.
I would not wish this upon anyone and certainly not a parent, although I have come to learn much about myself and what means most to me in this life, my family.
Calendar pages have been flipped, months have passed. Schooling stopped, sibling’s being juggled, animals on the balance, life on the back burner, we were in survival mode grasping for a taste of normal, a glimpse of what we used to have.
Invisible illness, the ones you cannot see and the amazing beings that suffer in silence all the while being judged by others because you cannot see her pain. My daughter has strength an army could draw from. Pain is her normal, excruciating pain. The pain that would bring grown men to their knees I see it in her eyes, she is never with out it yet she too carries on.
Hope, it seems to be all we have and no matter how small the offering is we have held to it like breath. Since the beginning of this journey our tour guides have left us wondering how to navigate this adventure and I found the voice I did not know I had.
It became clear to me my desire was to get direction and instruction as direct and clear as possible and yet that not happening would cause me to get frustrated. The institution has a way that is not familiar to our lives and yet we tried to mind ourselves the best we could to be open to what would come our way yet we felt often we were with out a voice and unheard.
Yet we are home now, grasping to our hope in the form of a private clinic and while we fund raise to get there we try to be as present in our time on the farm as we possibly can.
Living in the here and now has been the foundation of our family code yet the system has pushed me further from this through anticipation of waiting and wondering what the person that has absolute control over your destiny will say.
You lose yourself, you lose the moment and you end up nor here nor there of what you desire most. The grand prize of clarity through answers and solutions, will these afford the foreseeable discharge from the institution to get back to family to regain balance..?
What I learned coming out of our last stint in the hospital is that all you really have is the here and the now and that we were the lucky ones to draw the card that said the path to the grand prize will not be an easy road. We are strong enough to handle this and nature has timed summer to show us the way back to connection.
With the help of the horses and their needs being met through care and the heat requiring us to take shelter in the shade, we are present and we come now with a greater awareness and understanding to what that means.
I am grateful for our farm and all that she has to offer to us, I am grateful to have all of my children in close proximity they can fall into my arms and know I am here.
It is only a matter of time until the source of my daughter’s pain is revealed and we will have answers yet until then we are here, we are together and we are connecting and connected in the most heart filled moments we can create.