Sunday, May 30, 2010
The sun comes out
I was taken to a facility where I was given an evaluation by a psychiatrist and they made an appointment for me to see one on a regular basis. I was asked alot about my feelings and thoughts and was put on some medications which seemed to help a little. My panic attacks were manageable and my mood was less chaotic but I still could not fix the hole in my heart. I had faith that God knew what he was doing; I just didnt think that he realized that I wasnt the person he should be doing it to. I had no knowledge of special needs children. I was so tender hearted that I couldnt even look at them in public. Wondering the whole time why God would do this to a child and thinking that the poor parents must be a wreck. I am sorry if this offends anyone but I am only being honest. I wasnt mean, I just pitied the people in these situations. I knew I had neither the courage or the patience it required. It was all a big mistake. God was just trying to scare me for any bad things I might have done. He was just teaching me a lesson and when she was born I would see that that was his reason behind all of this. She would turn out normal and healthy and it would all be ok. It wasnt ok!!!!! With each Doctor visit, the news got more grim. Her heartbeat was strong but she wasnt growing. I was running out of amniotic fluid and this was causing the Ultrasounds to not show her. It was a guessing game for now. I finally decided that if I wanted to make this real in my mind; I had to tell my son. My sweet Jameson. He cried a little and then looked at me with love in his eyes so strong that there was no doubt that he meant what he was about to say. "Mom, it does not matter to me what she looks like!! I love her already and whatever happens she will always be my sister and I will always protect her." My heart changed at that moment and hasnt been the same since. I was no longer thinking I couldnt do this. I knew if my seven year old could face this with such bravery and resolve that I could too.
Friday, May 28, 2010
The thing about this blog is..............
I am stopping my story today to let everyone know why I decided to let people in to my personal life. As a mother of a child with special needs; I know how important it is to have someone on a similar journey as you to talk, listen and sometimes give advice. I personally have encountered very few and I still have times when I am in need of support only a person in my situation can give. This whole experience so far has been a trip I never thought in a million years that I could handle but somehow have managed the strength to do so. By sharing my story, I am hoping to help others and also get feedback to help myself. In order to do this I must tell how the story began and eventually blog each day about the new things I have seen and learned about my daughter Piper. She is a gift and a pleasure I can not imagine my life without now. I hope you all will be blessed as I am every day.
Thursday, May 27, 2010
The storm before the calm
I really dont believe I am in denial !!!!!! I was shaking and holding back the sobs but the tears could not be stopped. They ran down my face like rain. How could this doctor stand here without running any tests or doing any exams; look at my child for the first time and tell me she was mentally retarted? I was'nt in denial !!! I was completely ready for any diagnosis; but he had been in the room for a total of 5 minutes. How could he make these assumptions so quickly? Did every parent who heard these words feel as I did at first? I looked at my husband who was looking relieved as if the answer to all his questions had been presented to him. Should I join him in his pessimism? No; I refused!!!!! I left there with my own thoughts and worries and the drive home seemed like years. The feelings I had were nothing new or foreign to me. I had been in a whirlwind for the last two years.
My daughter was diagnosed with Goltz syndrome, a genetic disorder which I had been plagued with all of my life. A very rare disorder in which causes layers of skin to be missing and teeth, nails and hair to not develop normally. I had a light case of it according to doctors who knew about the syndrome; but nonetheless I have suffered much discomfort throughout my 40 years of life.
I was 29 years old when I found out I was pregnant with my first child. My sweet son Jameson. I was not expecting to get pregnant and was not sure I was ready for motherhood. I believe that what I was feeling at the time is probably the same thing any young woman who was newly divorced, with a new boyfriend of a few months would feel. There was also much worry over the babies health because of my condition and the stories my mom had been told when I was born about the effects of one Goltz syndrome child producing another. It was very frightening to me but I decided that perhaps they were wrong since these statements were mad years ago. Besides, there was nothing I could do. The baby was already coming and all I could do was to hope and pray that he would be fine. With targeted ultrasounds and new technology, we were thrilled to learn that it was a boy and he appeared to be perfectly normal. Several months later we were not disappointed as we held our child.
Seven years later we found out we were pregnant again and all of the past fears threatened to follow me, but I managed to push them aside and be happy that my son would not be an only child. He was the most excited of all of us. Arrangements were again made for tests and targeted ultasounds to rule out any abnormalities. We were also to find out the sex of the baby. The doctor never said a word during the ultrasound which was strange to me but I just thought it was perhaps his bedside manner. After the test he stepped out of the room and alot of time passed. When he finally came back the look on his face was grim. He sat down and told us he had some bad news. He explained that our baby was abnormally small and that he could see a large cleft on one side of her face and mouth. We had the news we had wanted. It was a girl. But we couldnt even breathe. We felt as if we had been hit in the stomach with a brick.
We continued to listen to him as he explained that at this stage he could not predict how many abnormalities our baby would have or even if she would be carried to full term. Only time would answer these questions. I felt as if I was going to collapse. I had to be helped out to the car and was dreading the ride home and all of the retelling of our news to many excited family members.
The thoughts of the baby I carried inside me being born with tremendous problems and possibly needing a lifetime of care was overwhelming to me. Not because I wasnt willing, but was I capable? Was I stong enough mentally and emotionally. My next trip to the doctor revealed that she may not have all of her limbs. We were also told that the cleft on her face was very big, deep and severe. I was taken aside; away from my husband and talked to by a female resident doctor and was expalined that if I chose to terminate the pregnancy I had only one week left to do so.
I knew I could never do this. And first of all I want to say that I know there are people who will read this and perhaps they will stop because of what I just said. I am a christian and not ashamed to say so but I am not a religious fanatic. I believe in a womans right to choose. That is not to say that I believe abortion should be used as birth control and sometimes I do think that irresponsible behavior and unwanted pregnancy unfortunately use this method.
However; I feel it is not my business or my place to judge someones decisions or actions. This is for our Lord. For he is certainly in charge and I have enough of a challenge to watch out for my own life and my children so that is what I will stick to. For I am the only person who will have to answer for me in the end.
My family, with my mother included were very strongly advising me to think carefully about termination. They were extremely worried about the effects of having a sick child. Was I mentally able to handle the possibility of death or a lifelong commitment of care and how would this affect my 7 year old son. He was a very sesitive child. Loving and kind. We wondered if he would be able to cope. I never questioned my inner voice. It had told me all along that there was a reason for this child and whatever the outcome we would survive.
On the outside I was optimistic and tried to have as normal and happy a pregnancy as possible but I was constantly aware of my surroundings. Nobody seemed as excited as they did when Jameson was born. No one offered me a baby shower. I am not saying they were wrong for not doing this. I am only trying to express that when it never happened, my feeling was that perhaps they were not expecting a baby to come home from the hospital. It was painful. And I was also very sick. I had severe sore throat which to me felt like strep for almost the whole 9 months. I was very tired and very nauseated. These things are normal for any pregnant woman but to me they were normal times 10. I had such pain in my hips and my back that I would cry myself to sleep if I ever did get to sleep. I could only walk short distances which made it impossible to get groceries or get out much. With the physical problems; eventually my emotional stability started to crumble. I finally had my breakdown. I had started a new and very complicated job and had to leave it. I had asked my husband to understand I needed help but his answer was "stop being a baby" "you are making this whole thing a big drama and you are just going to have to accept what is happening to us and deal with it." He had never been a very understanding person. His family was not an emotional kind of family. Never talking of feelings or admitting any pain in their lives.
I knew talking any further about this with him was not an option. I quickly picked up the phone and called my mother. Mom, I am sick, I said. I am having a nervous break down and I need help now. I was having a panic attack as we spoke. They had been happening alot and I was terrified. She said; I will be right there.
My daughter was diagnosed with Goltz syndrome, a genetic disorder which I had been plagued with all of my life. A very rare disorder in which causes layers of skin to be missing and teeth, nails and hair to not develop normally. I had a light case of it according to doctors who knew about the syndrome; but nonetheless I have suffered much discomfort throughout my 40 years of life.
I was 29 years old when I found out I was pregnant with my first child. My sweet son Jameson. I was not expecting to get pregnant and was not sure I was ready for motherhood. I believe that what I was feeling at the time is probably the same thing any young woman who was newly divorced, with a new boyfriend of a few months would feel. There was also much worry over the babies health because of my condition and the stories my mom had been told when I was born about the effects of one Goltz syndrome child producing another. It was very frightening to me but I decided that perhaps they were wrong since these statements were mad years ago. Besides, there was nothing I could do. The baby was already coming and all I could do was to hope and pray that he would be fine. With targeted ultrasounds and new technology, we were thrilled to learn that it was a boy and he appeared to be perfectly normal. Several months later we were not disappointed as we held our child.
Seven years later we found out we were pregnant again and all of the past fears threatened to follow me, but I managed to push them aside and be happy that my son would not be an only child. He was the most excited of all of us. Arrangements were again made for tests and targeted ultasounds to rule out any abnormalities. We were also to find out the sex of the baby. The doctor never said a word during the ultrasound which was strange to me but I just thought it was perhaps his bedside manner. After the test he stepped out of the room and alot of time passed. When he finally came back the look on his face was grim. He sat down and told us he had some bad news. He explained that our baby was abnormally small and that he could see a large cleft on one side of her face and mouth. We had the news we had wanted. It was a girl. But we couldnt even breathe. We felt as if we had been hit in the stomach with a brick.
We continued to listen to him as he explained that at this stage he could not predict how many abnormalities our baby would have or even if she would be carried to full term. Only time would answer these questions. I felt as if I was going to collapse. I had to be helped out to the car and was dreading the ride home and all of the retelling of our news to many excited family members.
The thoughts of the baby I carried inside me being born with tremendous problems and possibly needing a lifetime of care was overwhelming to me. Not because I wasnt willing, but was I capable? Was I stong enough mentally and emotionally. My next trip to the doctor revealed that she may not have all of her limbs. We were also told that the cleft on her face was very big, deep and severe. I was taken aside; away from my husband and talked to by a female resident doctor and was expalined that if I chose to terminate the pregnancy I had only one week left to do so.
I knew I could never do this. And first of all I want to say that I know there are people who will read this and perhaps they will stop because of what I just said. I am a christian and not ashamed to say so but I am not a religious fanatic. I believe in a womans right to choose. That is not to say that I believe abortion should be used as birth control and sometimes I do think that irresponsible behavior and unwanted pregnancy unfortunately use this method.
However; I feel it is not my business or my place to judge someones decisions or actions. This is for our Lord. For he is certainly in charge and I have enough of a challenge to watch out for my own life and my children so that is what I will stick to. For I am the only person who will have to answer for me in the end.
My family, with my mother included were very strongly advising me to think carefully about termination. They were extremely worried about the effects of having a sick child. Was I mentally able to handle the possibility of death or a lifelong commitment of care and how would this affect my 7 year old son. He was a very sesitive child. Loving and kind. We wondered if he would be able to cope. I never questioned my inner voice. It had told me all along that there was a reason for this child and whatever the outcome we would survive.
On the outside I was optimistic and tried to have as normal and happy a pregnancy as possible but I was constantly aware of my surroundings. Nobody seemed as excited as they did when Jameson was born. No one offered me a baby shower. I am not saying they were wrong for not doing this. I am only trying to express that when it never happened, my feeling was that perhaps they were not expecting a baby to come home from the hospital. It was painful. And I was also very sick. I had severe sore throat which to me felt like strep for almost the whole 9 months. I was very tired and very nauseated. These things are normal for any pregnant woman but to me they were normal times 10. I had such pain in my hips and my back that I would cry myself to sleep if I ever did get to sleep. I could only walk short distances which made it impossible to get groceries or get out much. With the physical problems; eventually my emotional stability started to crumble. I finally had my breakdown. I had started a new and very complicated job and had to leave it. I had asked my husband to understand I needed help but his answer was "stop being a baby" "you are making this whole thing a big drama and you are just going to have to accept what is happening to us and deal with it." He had never been a very understanding person. His family was not an emotional kind of family. Never talking of feelings or admitting any pain in their lives.
I knew talking any further about this with him was not an option. I quickly picked up the phone and called my mother. Mom, I am sick, I said. I am having a nervous break down and I need help now. I was having a panic attack as we spoke. They had been happening alot and I was terrified. She said; I will be right there.
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