I barely made it to the car, loaded up the groceries, closed the door and the tears spilt. My body trembled as I sat in the dark letting my emotions take their course. About 15 minutes prior I had checked Facebook and saw Ryan’s latest post. A loving picture of me kissing his cheek. It was lovely, it was beautiful, it was the real me and it is exactly how I feel about him. I love the picture. However, what that picture represents to me the world wouldn’t know unless I wrote. So in my vulnerability I write about a topic that so few are willing to talk about.
That simple kiss on the cheek is all I can do for Ryan. I can hardly touch him, I can’t hug him, I can’t embrace him in any real way. The only other form of physical contact is to hold his hand or rub his head. For the last month his body has been increasingly sensitive to touch. Any time he feels I’m getting too close the ninja reflexes come out and Ryan shields his body. He hugs friends, but those hugs aren’t comfortable as they can cause him pain. In his love he allows those few hugs here and there because he knows no one understands his physical challenges. In actuality there are millions that understand his pain, but we do not hear their pain nor understand their pain. We do not take the time to ask or take the time to understand. I totally get it, I was one of those people too. There is absolutely nothing wrong with not knowing, just as there is absolutely nothing wrong for a person to not want to share their pain. It is simply where we are in the process of our human existence. We can however choose to be different. It is totally up to you as it is totally up to me.
The pain I speak about is in plain sight but hidden from the world to see. There are so many living in pain, some are in physical pain and some are in emotional pain, many in both. The smiles are courageous but deep inside the hearts are broken, yearning to be mended so forward progress may continue. Ryan lives in physical pain everyday. He has to make daily decisions to take one hour at a time overcoming physical issues and mental battles deciding what he is capable of doing each day. I live in the constant battle of allowing my human emotions to process all the while fully aware that our response to those emotions are 100% a choice. So everyday I make a choice in how I live and respond to these emotions. We live our lives literally day by day with no ability to know what the outcome will be. At this time Ryan’s tumors are regressing (HUGE YAY!), but his ascites is worsening. Anyone that understands ascites understands the uphill battle we face. A battle so few can relate to. A battle that can literally decide life and death. While those words are grim, my soul is full of hope. Ryan also lives with hope and peace. A peace that passes all understanding and one that I have a hard time putting words to. While many wonder why he asks deep questions and why he constantly challenges religious beliefs what most probably do not fully grasp is the peace that he lives with. The questions haven’t always brought him answers, however they have brought him peace. I feel the same peace. I feel the same hope. So we move on, day by day. We move on being who we are, who we love to be, who we choose to be.
No matter our day, no matter our challenges each day we get to decide who we are and who we choose to be. Our choices dictate our being, our being dictates what we do and what we do dictates what we have. ~Caroline Luelf
So, in ending, that simple kiss means everything to him . . . and everything to me. Because that is all we have. At this moment, we have each other and I wouldn’t change a thing.
Live Free. . . Because YOLO!
P.S. Thank you, LV164 & Choice. You have changed my life. Without so many deep realizations of who I am and what I choose to be I’m not sure I could be so strong.
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