On Being a Parent
Being the parent of a profoundly retarded, critically ill daughter, I get many messages from people asking me for prayers and healing for a young family member who is facing medical problems. And I always do whatever I can.
The one thing I have learned over the years, is that I have no control over what my daughter chooses to experience in this lifetime.
I guess I should give some background. I had tried for many years to become pregnant, even taking fertility drugs. Finally 11 years and one miscarriage later, I was pregnant. I did everything right through the pregnancy. In my 6th month, we were in a car accident causing me severe injuries – broken nose, ribs, fractured pelvis, facial cuts.
It was obvious by sonogram that Samantha had received a bump on her head, probably by hitting my pelvis. All the tests they did on her showed that she was doing well. We were hoping that she had not received any damage.
I was very concerned through the next two months of my pregnancy. I was on pain medication constantly, which I knew was not good. At one point, I began to feel Samantha shuddering, as if she was having seizures. The doctor passed it off as nothing.
Samantha was born 3 ½ weeks early. The doctors had done a sonogram a few days earlier, and though nothing was said to me, this time it was obvious that something was wrong. Instead of Samantha’s head growing, it was smaller than before the wreck. When I went to the hospital with mild labor, they induced and delivered her as quickly as they could. They never let on to me that they had a concern. I expected everything to be okay until she was born blue and rushed immediately to neo-natal intensive care.
This is when the nightmare began. I still had not completely recovered from my own injuries. Visiting Samantha in the Intensive Care and seeing all the tubes and machines hooked to her was very frightening. The doctors did not know what was wrong with her at that point. It was about a week before they could do a CAT scan. Their diagnosis was that she had no brain, only a brain stem. We were told that she would be a vegetable and that we should place her in a home.
Needless to say, I was devastated. The last thing we expect is to have a child who is not perfect. No one prepares us for the chance that something can go wrong.
Apparently, at the time of the wreck, the blow to her head had caused her to have a stroke. A fetus’ blood will not clot and when blood touches brain tissue, it destroys it. So, for the two months I carried her, the blood ate away at her brain until there was almost nothing left.
By the time she was 3 months old, she had developed hydrocephalous, which is excess fluid on the brain. The doctor was very slow to diagnose it and by the time he did, it was very severe. He told us that they would probably not do surgery on her because she was so brain damaged.
We were lucky enough to be sent to one of the best Pediatric Neurologist’s in Dallas. He calmed a lot of the fears the Pediatrician had caused. He assured us that Samantha did have more than a brain stem, that she had some cortex, which is the most important part. We learned that no one could say what she would or would not do. And he called in a surgeon immediately and she had surgery the next day. Needless to say, I never went to that Pediatrician again.
Seeing Samantha after surgery was one of the most frightening times of my life. I was called into the recovery room to hold her as she woke up. She was very pale and cold as ice. Half her head was shaved and a bandage covered most of it. I was terrified. But this was only the beginning of my journey through fear with Samantha.
When she was young, I was determined to prove everyone wrong. I was determined that she would sit, and stand, and do all the things the doctors told us she would never do. I was lucky enough to be able to provide her with the physical therapy that she needed. And eventually she could sit some, and she did stand with assistance, and pick things up, and make verbal sounds.
I was a Southern Baptist at the time she was born and heard all the normal comments. “God had a reason for this.” “You are being punished for something.” And on and on. I could not accept this. MY god would not do something like this to punish me. He would not do something like this to punish Samantha. I could not accept that this would be the only life experience that my daughter would have.
I was very angry with God. I screamed at him. I cursed him. I turned my back on him. For several years, I had no spiritual base in my life. I began to study the different religions and learned about reincarnation. I had always had problems believing that we had only one life and then spent eternity playing harps in heaven. That never made sense to me. But reincarnation did! This wasn’t the only life Samantha would ever experience! She had even CHOSEN to have this life experience and I had chosen to have it with her. Learning this totally changed my life and my attitude toward Samantha.
Over the years, I learned to communicate with Samantha, first using kinesiology and a pendulum and later psychically. Samantha was happy to finally to be able to communicate some of her wishes. I learned that she is the most psychic person I have ever met.
Samantha has been known to turn toys on sitting on a shelf across the room. She has unscrewed light bulbs miles away from where she was and thrown them at someone to get their attention. She puts thoughts in her nurse’s heads so that they know what she does or does not want. She has refused to learn any kind of normal communication usually taught to handicapped children. She feels since she can use her psychic abilities so well, she doesn’t have to lower herself to do it in any normal way.
When Samantha was 7, she decided that she wanted to die. Her father had taken a job offshore and was gone a week, then home a week. Every time he left, she would get pneumonia. He would come home and she would get well. I guess she thought that she would be able to get him to come home by getting sick, but it never worked. It reached a point, that when I took her to the doctor he said, “Dad must have left.”
This was a very difficult time for me. Samantha was angry with me because I wouldn’t leave her alone and let her die. She even asked me to help her, which I refused. I wished many times that I had not learned to communicate with her.
This was 10 years ago. Samantha has been so close to death so many times that everyone is amazed that she is still alive. Doctors have commented on her ability to control her body functions and their amazement that she can ‘purposely’ take herself to the brink of death and then bring herself back.
During this time, I have grieved more than I thought it was possible for someone to grieve. I have prayed that she would die so that I could be released from my nightmare. I have had to deal with my guilt over taking such good care of her that she did not die at times when she probably should have. I have put my body through such strain in my attempt to care for her that I now live in constant pain. I stopped living my life for many years and devoted everything to her.
During this time I have learned some of the most valuable lessons a person can learn in life. I have learned to find the blessings in what seems to be a nightmare. I have learned that I don’t have to feel that I was a bad mother because I prayed for her death, that it was a normal emotion. I have learned to take my life back and not try to live hers for her. I have learned that other people can take care of her; it doesn’t have to always be me. I have learned to honor her as the special person she is. I have learned that I do not have to feel guilty about her being alive. If she were really meant to die, she would have. I have given her permission to die and let her take charge of her own life, and she is actually doing better.
The most important thing we can do for our children, healthy or not, is to accept them AS THEY ARE. I spent years determined to make Samantha something she didn’t want to be. She was not meant to be normal; to sit, or walk, or talk, or any of the other things we expect. She is exactly the way she wants to be, and I honor that now. We can spend so much time running from doctor to doctor, and miracle cure to miracle cure that we ignore the beautiful soul that the child is. Sometimes our time can be better spent just hugging them and loving them. Sometimes all they want is to be accepted just as they are, and loved for who they are. When we can do that, things change for us and the child.
Facing the death of a child is never easy. I still panic when Samantha gets really sick. I will never be prepared for her to leave. But, she has my permission to go or stay as she chooses. She has no doubt that her caregivers love her unconditionally, just as she is.
She has taught so many people so much in this lifetime. She could have never taught the same lessons had she been born ‘normal’. She has taught many doctors that not everything happens as it is written in their books, that each person is different. She has taught many doctors that alternative methods work better than theirs. She has opened the eyes and mind of many of her caregivers as she leads them into the psychic world where she lives. She has taught many people that though they see her as a vegetable, she is in reality smarter than they are. And she has taught me to live my own life, and let others live theirs. I cannot make her decisions for her and have no control over what happens. She has also taught me that the worst of circumstances can be gone through with grace and acceptance.
copyright 2001Claudia McNeely
Samantha passed away on June 10, 2006
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