As I sit next to my daughter Ellen as she lies in her bed I get angry and it grows very dark. The frustration and despair that grows daily as I watch her slowly try to heal from all that has taken up her life through her health consumes me, etching and burning into my heart and soul.
Then a few days ago while pitying myself I came to an obvious realization. My reality check was this: I can deal with the heartache if she is still alive if I can still see her beautiful eyes that can smile back at me with her unconditional love.
I fear the day I will no longer see her and that is a distinct possibility as she clings to whatever health she still possesses and that I am lucky she is still with us.
Sometimes it gets dark, so dark I can’t see or feel anything but this sadness that consumes me and my wife and sons. I think I need a candle to punch a hole in the darkness and let in the light that is life. That light gives me some solace that she is still alive, that when she is feeling good sees me and smiles, claps her hands and says in her way: “I’m glad you are here Daddy. No one but you and mom come to sit with me in my pain, in my fear and my darkness of fear.
Ellen and her parents share the same needs in these hours of darkness; despair, and loneliness. We sit for hours, me in the morning hours and my wife in the afternoon hours all by ourselves with my daughter. There is no one else to talk to except an occasional staff person. It is cold and sad but we will out of love for our child, hang on until the end.
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