'We must be willing to let go of the life we have planned, so as to have the life that is waiting for us.' ~~E.M. Forster~~
Ever go swimming in the ocean, and get knocked over by a large wave? Your body tossed around, swirling, struggling to gain your footing, only to be dragged to the shore, completely disheveled? Sand in places it shouldn't be? That is how I feel my life is. All the time. I want to get to the shore for a reprieve, but the ocean keeps sucking me back in. This has made me exhausted. No treading water. I just don't feel as strong as I once was right now. What negative energy I used to be able to deflect, I take on. It seeps into my skin, filling every crevice. And so, I feel a heaviness, as if I am wearing a lead coat. Not a life jacket. I want to take off this coat that weighs me down, but the zipper is broke.
After dropping Roxy off at school the other day, I turned on the radio, and proceeded home. As I turned down our street, a song came on that brought me to a sweet time in my life. I pulled into our driveway, parked the car, and without warning, I began to cry. It took me by surprise. I did not expect such a reaction from a silly song. But, it wasn't really the song. It was the memory of a time in my life that was simple. Simple. The word does not seem fit in my vocabulary any longer.
This was no ordinary cry. It would be what could be described as a 'melt down'. My body convulsed. I couldn't catch my breath. My heart was racing. I wailed. My body slumped down on the steering wheel. I held onto it, clenching so tight, my knuckles turned white. It lasted for twenty long minutes. I cried for what was, I cried for what I thought would be. I cried for what I am afraid will never be. When I finally finished, I was completely drained. Exhausted. Empty. After a cry like that, we empty ourselves. I felt as if I had space in my heart again.
Most weekends are consumed caring for Roxanne, with my husband. We are two people trying so hard to hang on. Hangin on so we don't fall apart. Most days, we are white knuckling it. Playing 'tag team' caring for our disabled daughter. Two people cooped up for any period of time will inevitably start bickering. For us, it's a form of communication. In some ways this is a good thing. Where there has been silence for so long, there are now words. Words that are spilling out. The things that we should have been discussing for so long, the things that we have kept silent in the chambers of our souls, have all begun to surface.
I should be happy about this, and I am, but right now, what I want, what I desire, is peace. Peace from turmoil. Peace from chaos. Peace from crisis. Peace from anyone else's demons. Peace! I have my own demons to contend with right now. I have my own dragons to slay. Those damn fiery dragons. Stupid Lizards! I have always been the one to be strong for everyone else. I have been the glue. But, I've become 'unglued'...
I yearn for those days long ago, the simple, silly days of years past. All the things I was able to do. That my body was able to do. The things taken for granted. The dreams I had for myself. The life I envisioned for myself. All the things I wanted to do. Still want to do. My 'Bucket List' is full! I think that is what the tears were for. That is one of the reasons I cried so hard. Because there is a 'letting go' of the life you planned. Adjusting dreams. A surrendering to the 'what is'.
I could linger in the past if I wanted to. But dragging one foot in yesterday, prevents us from fully committing to today, and whatever the future may have in store. I don't know what today will bring. Every time I think I got it all figured out, it changes. I can safely assume it will involve devoting most of my energy to Roxy. I'll continue to do my best, give it my all, fight the good fight, and try leave a legacy to my daughters that I love them more than I love myself, and that they make today, and all my tomorrows worth waiting for. That is the 'what is' of my life. That is, as they say, what it is. And that is, okay with me.
Wednesday, January 26, 2011
Friday, January 14, 2011
What's your value? (previously posted on my facebook page)
The purpose of life is a life of purpose. ~Robert Byrne
During my consultation recently with the Orthopedic Specialist about Roxy's tethered spinal cord, the subject of the differing schools of thought in the medical community regarding the 'value' of a person's life came up. I wasn't sure exactly why he decided to broach the subject, but I do know why now, in the grander scheme of things. I will get to that in a minute.
There are committees that make decisions regarding donor organs, and which person would be best 'suited' to receive it. The decision is usually made to opt for the person that has the most 'value'. The person that will be a 'productive member of society', etc. During our conversation, the surgeon told me that there are differing opinions as to what should be done with a child like Roxy. I said, 'You mean disabled?'. He said yes. He said that one school of thought is that no extra ordinary means should be taken on a child whose life expectancy is realistically shorter than most, and what quality of life would it give? What value is she worth? What will she contribute? How will she give back? I asked what HE believed. After all, this is a person whom I am about to completely entrust my child's life, to possibly perform surgery on. I want to make sure that HE feels she has as much VALUE as any other HUMAN BEING.
His answer comforted me. He said he feels that she is a human with just as many rights as any other human. He would do his very best to ensure that he can make her as comfortable as possible, and work to give her the best quality of life. He would need an MRI first, which is risky in and of itself, as Roxy will have to be put under anesthesia, which carries with it risks, since she has delays, and is riskier for children that have delays. He said he feels it would be 'unethical' to do unnecessary anesthesia, if I am not willing to do the surgery. I am, so I will.
As he was discussing the 'value' of a persons life 'like Roxy', I was kneeling in front of her, trying to keep her from getting out of the chair. She began pulling on my sleeve, the way she does when she wants my attention. I said excuse me to the doctor, turned toward her, and said 'Yes Roxy?'. At that, she took my face in her hands, pulled my face toward hers, puckered up in only the way she can, kissed me, and then put her forehead on mine. We looked into each others eyes, long and hard, and in that moment, she said more than any words could possibly express.
The surgeon was moved to tears. He said that was the most precious thing he has ever witnessed, and that it would stay with him forever. In that moment, Roxy showed him exactly what her worth is.....
During my consultation recently with the Orthopedic Specialist about Roxy's tethered spinal cord, the subject of the differing schools of thought in the medical community regarding the 'value' of a person's life came up. I wasn't sure exactly why he decided to broach the subject, but I do know why now, in the grander scheme of things. I will get to that in a minute.
There are committees that make decisions regarding donor organs, and which person would be best 'suited' to receive it. The decision is usually made to opt for the person that has the most 'value'. The person that will be a 'productive member of society', etc. During our conversation, the surgeon told me that there are differing opinions as to what should be done with a child like Roxy. I said, 'You mean disabled?'. He said yes. He said that one school of thought is that no extra ordinary means should be taken on a child whose life expectancy is realistically shorter than most, and what quality of life would it give? What value is she worth? What will she contribute? How will she give back? I asked what HE believed. After all, this is a person whom I am about to completely entrust my child's life, to possibly perform surgery on. I want to make sure that HE feels she has as much VALUE as any other HUMAN BEING.
His answer comforted me. He said he feels that she is a human with just as many rights as any other human. He would do his very best to ensure that he can make her as comfortable as possible, and work to give her the best quality of life. He would need an MRI first, which is risky in and of itself, as Roxy will have to be put under anesthesia, which carries with it risks, since she has delays, and is riskier for children that have delays. He said he feels it would be 'unethical' to do unnecessary anesthesia, if I am not willing to do the surgery. I am, so I will.
As he was discussing the 'value' of a persons life 'like Roxy', I was kneeling in front of her, trying to keep her from getting out of the chair. She began pulling on my sleeve, the way she does when she wants my attention. I said excuse me to the doctor, turned toward her, and said 'Yes Roxy?'. At that, she took my face in her hands, pulled my face toward hers, puckered up in only the way she can, kissed me, and then put her forehead on mine. We looked into each others eyes, long and hard, and in that moment, she said more than any words could possibly express.
The surgeon was moved to tears. He said that was the most precious thing he has ever witnessed, and that it would stay with him forever. In that moment, Roxy showed him exactly what her worth is.....
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