The usual preparations were made for a C-section and several pediatric doctors came by to assure me that they were aware of the situation and they would do everything they could do to take care of the baby after she was delivered. All of my nurses and doctors knew I was afraid and they were so kind and caring. Continually assuring me that we were in the best hands possible. The moment finally came and I was wheeled into delivery. I remember feeling heavy, as if I couldn't breathe and it seemed like a lifetime before they got her out. They told me I had a beautiful 2 pound baby girl but I never got to see her or hear her cry. They must have given me something in my IV because the next thing I remember was waking up in recovery. I asked the nurse about Piper and she told me that they were getting her ready to go across to children's hospital the newborn ICU unit. I cried. Is she ok? I asked. The nurse explained that she had numerous issues and needed to be watched very carefully. My family came in and told me a little about what was going on. My mom, who I could tell was trying to hold it together for my sake was looking very stressed. My husband was crying and telling me that things were pretty bad.
I was trying to talk to my mom and although I was pretty groggy; I could see an incubator being rolled into the room and over to my bed. Here is your baby, the emt said to me. We thought you would like to see her before we take her to Children's hospital. I looked at my tiny child laying there. She only had half of a face. Only one eye. I was immediately worried about her condition but also could tell that she was so sweet, so tiny, so beautiful. I loved her so much and as much as I wanted to be with her. I had to let her go. I could not hold or touch her so I just said; goodbye Piper Grace, Mommy loves you.
Wednesday, June 30, 2010
Tuesday, June 29, 2010
The Christmas Surprise
On December 23rd 2006, My mom and I went to have my last Ultrasound done. We were pretty nervous about what we would see and it seemed to take forever for the tech to talk to us as she was taking pictures and measurements. She told us she had to step out of the room to talk to the Doctor and then instructed me into a waiting area. There were no others around and my heart was beating so fast. I felt as if I couldn't breathe. The doctor finally came after what seemed to me like a lifetime and explained that neither he or the ultrasound tech could see the baby well. They had hoped to be able to tell more about her abnormalities but I had so little amniotic fluid that it was impossible to get pictures. It was also unhealthy for the baby to be so low on amniotic fluid. I was scheduled for an appointment with an OBGYN at UAB in Birmingham on December 26th. I tried to enjoy Christmas for my son. My mom an my sister decided to be the ones to drive me to my appointment. I was a bundle of nerves. I had no idea what to expect and neither did my family. He did an ultrasound and then sat all of us down and told us that because Piper was not growing as she should be at this term and because I was low on amniotic fluid. He was arranging surgery as we spoke. You are going to have a baby today. We just need to get her out and start to evaluate her needs since they were not sure how severe they were.
My mind was racing and I knew this was it. I said a silent prayer that God would protect my baby and give me the strength I needed. I was then taken to be prepped for surgery.
My mind was racing and I knew this was it. I said a silent prayer that God would protect my baby and give me the strength I needed. I was then taken to be prepped for surgery.
Wednesday, June 2, 2010
Perfect Missy Prissy
I prayed one night that God would help us to find my son a dog. I know this probably sounds like a silly thing to pray for but I hoped that since I was asking for him and not for me that God would understand. We really had very little money, had no idea how we would afford shots or how we would house train while trying to get ready for Piper but we went to the shelter just to look. As we went down the second isle a sign caught my eye hanging from one of the cages. Inside the cage was a small longhaired, expensive looking little dog who looked very out of place at the pound. I read the sign. House trained
All shots up to date
Good with children
Pomeranian/Chihuahua Mix
All I can say is: GOD ANSWERS PRAYERS!!!! I even found out I knew the previous owners who took good care of her but moved to a place which would not allow pets. We got her for $20 and her name was Prissy. She loved us immediately and my son had a great surprise when he got home. I had never seen him this happy. He still says Prissy is the best gift he has ever gotten. She is a precious part of our family that I know our Lord led us to that day.
All shots up to date
Good with children
Pomeranian/Chihuahua Mix
All I can say is: GOD ANSWERS PRAYERS!!!! I even found out I knew the previous owners who took good care of her but moved to a place which would not allow pets. We got her for $20 and her name was Prissy. She loved us immediately and my son had a great surprise when he got home. I had never seen him this happy. He still says Prissy is the best gift he has ever gotten. She is a precious part of our family that I know our Lord led us to that day.
Getting Ready
I decided that if I still had a job, I would have something to keep my mind off of my worrying; but I could'nt go back to work so close to the end of my pregnancy so I started a project. I decorated her nursery and started picking out names. Damine and I decided on Piper Grace. We decorated her room in bunnys. Everything was pink. We had her name spelled out in wooden letters on one wall and Damine painted the letters in pastel colors. It was beautiful. I was trying my best to put my troubles aside and get ready for a new baby. I bought baby clothes, and other items for her. I washed them and put them up and felt a great sense of normalcy to my life now. I was also trying to include my son in all of these tasks so he could be excited about his sister coming home. He had seen as much sorrow and anxiety in our home as he needed to. Although I tried not to show it in front of him, I will be the first to admit that I have never been one to hide my feelings well. I was also getting ready for Christmas and I was due in January. One day right before Thanksgiving; Jameson came to me crying and told me he was so worried that he couldnt sleep. I tried to comfort him as best I could. I knew that he had probably had his own worries for a long time and didnt share them with me. I suddenly felt very selfish. I should have been more protective of him. More strong for him instead of going around feeling sorry for myself. I had to fix it but didnt know how. For several years Jameson had been asking for a dog. We decided that this Christmas, that was what he needed. A companion to help him pass the time until all of this was over.
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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