Every day I mourn Ellen and I die a little inside each day. It is difficult to see a child suffer, your child suffers and you feel the pain in your body and mind, your heartbroken and your zest for life escapes you.
For the last two years, Ellen has fought broken bones, cancer and pneumonia. My wife and I alongside of her have waged the battle as her advocate and we will continue to. Our lives have been taken over by the need to stay with her in hospitals, nursing homes and rehab centers, hours each day, every day including Christmas.
Yesterday was one of the worse days of my life. She has a serious wound and infection that maybe with her the rest of her life, causing excruciating pain and the fear I have is that the mediation will lose its effect and she will then be in constant pain. Antibiotics have been tried in the past but she rips out the pick-line causing the cessation of the treatment. My argument has been that once they insert the pick-line they secure it with an ace bandage because she doesn’t know any better.
As I visited her yesterday at the Medford Multicare Center, I was informed that the pick-line I requested would be inserted that day. Having arrived at 11:15 am, I fed her lunch and then waited for the EMS to arrive to transport her to Mather Memorial Hospital in Port Jefferson. I was informed that it would be an hour and a half before they would come since it wasn’t an emergency! They come about 2:30 pm and off we go to the hospital. I drive myself and when I arrive they are about to process her in. I sign some papers giving the hospital permission to treat her and they bring her to the emergency room at the nurse’s station.
Staff stop by to take blood, blood pressure, etc. and ask me questions about Ellen. Through the course of our waiting, there is a doped-up belligerent individual who is so bad the cops are called to convince him to obey staff orders. Amazingly he left alone as the police leave and he is next to my daughter. I anticipate a struggle with him if he comes near my daughter. At one point he is holding on to her side rail talking to someone, as I am about to edge off my seat and push him away! The staff and security intervene while I settle down as they take him away.
After 3 and half hours of mindless waiting, watching a pneumatic tube being operated by nurses and staff they tell me it will be another 2 hours at least. It is 3 hours later that they tell me they can’t take her because they have too many patients ahead of her, the procedure will occur tomorrow!
As I sat for the 5 hours of useless and fruitless waiting, I started to think of my life and how it is being wasted every day. I do for her what I can and she doesn’t even know what is occurring. She doesn’t realize she is even problematic, living her life in ignorance and not being able to process much beyond an 18-month level! For the last two years, we have given up everything every day for her sake.
Then it occurs to me that she is my daughter, not that she wanted to be born, but that as her –parents we are responsible for all this, she is just paying the consequences.
No comments:
Post a Comment