My oldest child is developmentally disabled. For 44 years of her life, I tried to find meaning to it and the unfortunate events that led to this sad conviction. She is a loving person, simple in her ways and doesn’t ask for much. Her family loves her, protects her and only hopes and works for her life to be filled with happiness. She doesn’t speak or have the ability for much reason, even though the reasoning in this world needs some explanation. But Ellen is special, and when I first heard that phrase, I didn’t believe, after all, what is special about a person who can’t talk, reason or even toilet? So many days I sat and wondered what would be the point of a life like hers? Who would ever need her, who would ever care? I joined an organization over 25 years ago, to support it to help me give to my daughter because I could never do for her what she needed in her life, and someday my wife and I would no longer be here for her.
When I am down and oh my soul so weary,
When troubles come and my heart burdened be.
Then I am still and wait here in the silence,
Until you come and sit awhile with me.
Then the unexplainable occurred, for no apparent reason, I got a call from Ellen’s home, telling me that Ellen had broken her leg, accidentally, and without any real reason that anyone knew! Would I come down to the emergency room at the local hospital? She was admitted and an exterior fixator was applied to her right leg, from the knee to her ankle, and in all that time she never complained or whimpered, just took the events in a resigned stride! She was put in a rehab center that was awful, then back to the hospital for a rod that was inserted into her leg. The surgeon wanted to release her back to the same nursing home and I wouldn’t have it, instead along with help from the agency, AHRC Suffolk, we managed to get her admitted into one of the finest there is, which led to the strangest of events, so little I knew.
You raise me up, so I can stand on mountains,
You raise me up, to walk on stormy seas.
I am strong when I am on your shoulders,
You raise me up, to more than I can be.
In the process of Ellen’s rehab was a woman, maybe in her 50’s who sat in a wheelchair all day without moving. Stephanie was a sweet woman who had no family, or friends and became attached to Ellen. I asked her if she had anyone who came to visit her and she said: No, no one comes.” As I was leaving one day I asked her if she would like to have me read to her when I visit my daughter, and her face lit up, suddenly there was more than just a gentle smile on her face. She was excited and eager. I asked if she got out much, into the courtyard and she then pulled the blanket away from her lap and revealed that she had no legs.
As Ellen progressed, it was time to leave the rehab center for home and told Stephanie.
One arm sits at Stephanie’s side, a mere appendage with no function left, and the other arm her only source of control of her body and the punitive world around her. I told Stephanie that although I would not see her every day, I would come by at least once a week and continue to read to her. Her eyes started to water and she reached out her hand and said: “YOU would do that for me?!” I said that I would see her soon. I wondered if she believed me. I did.
You raise me up, so I can stand on mountains,
You raise me up, to walk on stormy seas.
I am strong when I am on your shoulders,
You raise me up, to more than I can be.
Every Wednesday for the next few weeks, I visited her to read, and then we would put the book down and just talk. I asked her what happened to her that she was in the rehab center. In a very soft voice, she related how one Sunday she and her husband were driving to church when they were involved in a horrific crash. Over the course of 5 days, she lost each one of her legs and her husband, she had nothing else in this world. Her long-term memory was gone she didn’t even remember her parent’s names or her husbands. But as we spoke, I continued to try to ply her memory of those items locked away. Slowly she was beginning to remember things, names, and places, even jobs people held. She seemed a little happier with each visit. Then one day she told me of a wish she had, to have a prayer book from the Russian Orthodox Church. I said I would try to find one, went home and told my wife who immediately went online, and ordered one.
You raise me up, so I can stand on mountains,
You raise me up, to walk on stormy seas.
I am strong when I am on your shoulders,
You raise me up, to more than I can be.
The following week I couldn’t find her anywhere that day when I went to visit and was directed to her bedroom, where I found her asleep in her bed, so I left the prayer book on her serving tray and as I was leaving a nurse came in and woke her, so I returned to her bedside. She was pale, hardly able to open her eyes and her voice was weak and very low. It pained her to see me and so I said I had her prayer book and would leave it for her, as the nurse inserted some kind of reader contraption onto the point of her index finger.
I left very apprehensive and felt that maybe the end was near.
You raise me up, so I can stand on mountains,
You raise me up, to walk on stormy seas.
I am strong when I am on your shoulders,
You raise me up, to more than I can be.
The next week I decided to return, thinking I would call first to get a heads up on her condition. I called the rehab facility and after repeated attempts by the operator, and receptionist I could not get through. So I decided to just go and see for myself how she was. Getting off the elevator at the rehab center and said hello to one nurse I knew, and then turned the corner and started toward her room, down a long corridor, which houses the nurse's station at the end of it. As I approached, I notice the nurses who knew me were watching me as I came toward them, conferring like something was going on. As I passed my friends room, her name was no longer there and though maybe they moved her. But the nurses gathered together and came up to me, it was then I knew my friend had passed, just as I feared. I truly hope that she got a chance to read her prayer book, that it gave her some solace in her final hours, maybe it was what she needed and this was God’s way to give someone who has suffered greatly in her past, without friends or family a chance to find comfort. Maybe my daughter’s broken leg was for a reason, without my daughter in that rehab to recover, my friend would not have met me, and I would not have gotten her a prayer book she wished she had, something she requested prior to her last days and my last reading.
Somewhere up in Heaven she sits, not without legs or use of her arms, but with a spirit that rests from the turmoil and tragedy of her past. She is now an equal to all who have past. Small in stature: never diminutive in heart, but with her soul and spirit now who she is, like all of us will someday be!
From that day onward, I understood, what was happening was Ellen was teaching me, to understand that life is not centered around me, or even her, but by a higher authority than I realized! Because of Ellen, I got to meet and help people, to make wonderful friends and to appreciate my own life better, that no matter how bad it gets for me, I’m still needed and so I can’t quit on myself, or most importantly, them!
You raise me up, to more than I can be.
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