December 06, 1994 to June 01, 1996
On Dec. 6, 1994 I went into labor at about 1:30pm, and Amanda was born at 4:59pm that day. She was the most beautiful baby I had ever seen, she was tiny, five pounds and thirteen ounces. She had a headful of hair and was just a little beauty. I loved her so much, she was perfect.
My mother in law noticed that she had a weak cry, me, not being around too many babies, thought that it was ok. She continued to suspect something was wrong, but held her tongue about it, as she didn't want to scare us. We were just convinced that our beautiful little girl was just perfect. We began to notice when she was around 2 months old that Amanda still couldn't pick her head up when lying on her stomach. We asked her doctor about it and she told us that she was just a lazy baby, that she could pick her head up if she wanted to. A few more months went by, and one day Amanda's right leg became bruised on one side, and splotched on the other. I was at work, and her Nana was keeping her. She called the doctor, then she called me. Her leg only stayed that way for about a minute, but we took her in anyway, and she sent us to a neurologist at Childrens Hospital. We had to wait another month for that appointment, and by then Amanda was almost 6 months old. When we went to that first appointment they told us that they had no idea what was wrong, but that Amanda didn't have any reflexes, and that her dad and I didn't have many. We had to go back for testing that week. They did an EMG and a NCV, and they thought she had Spinal Muscular Atrophy II, but they wanted to do a muscle biopsy to be 100% sure. The diagnosis was Spinal Muscular Atrophy II. They told us that she would never walk, but would eventually learn how to sit up and roll over. We left the hospital devestated, but determined to do anything and everything we could to make Amanda's life happy. That was in June of 95, in July we took her back for a check up, in that month she had started labored breathing, and they changed her diagnosis to type I, Werdnig-Hoffmann Disease, and told us that she probably wouldn't live to see her first birthday. We were all devastated. How could this be; how could our precious little angel die? No, no this couldn't be possible. We looked at our little Amanda, sitting in her car seat such a beautiful, seemingly perfect little body. Oh God No, this can't be happening. We can't possibly lose our little angel baby. They put her on oxygen that day, just while she slept and while she ate.
Amanda was always a happy baby, she loved music, and she had a special feeder seat that she would sit in and watch her little music videos. By this time she could only move her arms from the elbow up and she could move her feet at the ankles. This was all the movement she had but she would listen to the music and move her arms up and down, her way of dancing, and she would sing, ya ya, ya, ya. She couldn't talk very much because she didn't have the stength or muscles to do so, but she was singing in her own way. Amanda loved people, she loved to go shopping, and we didn't get to take her much, but she loved it when we did.
SMA is a genetic disease that kills the anterior horn cells, it affects their swallowing, sucking, walking, crawling, sitting, etc. There is no treatment and no cure. To learn more about SMA go here. Families of SMA Home Page
I took a leave of absence from my job and Amanda's Nana and I began our labor of love to take care of this little angel and make her life as happy as possible. This was to be the most heartbreaking experience of our lives. Amanda's Nana would come over every morning and help me take care of Amanda. Some nights I would be up with her all night. I am so thankful that I had my mother-in-law next door, I couldn't have taken as good of care of Amanda without her. We worked together to give Amanda the best care that she could possibly have.
I decorated her room with her favorite things, dogs. We cut out pictures of cute little dogs and pasted them all over her walls. I hung bright colorful pictures at Amanda's eye level so that when she woke up, she would see bright happy colors. We invented games that Amanda loved to play. We would lay her on the big bed and I would lie on one side and Amanda's Nana on the other, and we would play our own version of the Hokey Pokey. Amanda just loved this game and she would laugh her little laugh and her eyes would just shine with happiness. We worked hard trying to find ways to entertain Amanda and keep her from being bored. We searched high and low for toys that were light enough for Amanda to play with by herself. She was bored with all the baby toys that she had.
Amanda's Daddy would play a game with her that he called riding the elevator. He would support her entire body in both his arms, and bring her way up to the ceiling, and then drop down to the floor. Oh, how she loved to play this game! When he would put her up on his shoulder and walk around with her, she would get this look on her face like, "Look at me!!!!" We loved to see this look on her face.
We would massage her legs, and move them so that they wouldn't get stiff. We had to find clothes that were cool and comfortable, and that didn't have elastic in them that would cut off her circulation. Amanda stayed hot all the time, and we had to run the air conditioner all the time, even in the winter. Her feet stayed cold, red and wet. If she wore socks, her socks would get wet, then her feet would get colder. We kept a blanket over her feet most of the time. Her nurse said that this was caused from her labored breathing. This problem was later solved when Amanda was put on B & O and Chloral Hydrate as it alleviated her pain and she could breath better.
Whenever her nurse from Hospice would come to check on her, when she would try to listen to her chest, or anything, she would hollor "Daaaaddy", "Daaaaddy" wanting her daddy to come and rescue her.
As the months went by Amanda became weaker and weaker, her muscles being destroyed day by day by this terrible disease. At each stage of the disease our hearts broke more and more as we watched her being robbed of the use of her body. The day came that she could no longer turn her head from side to side in her bed. We had to place her in the bed and try to arrange her body in a way that looked comfortable to her. We would massage her little body and manually move her arms and legs so her little limbs would not become twisted from not being used. She loved for us to do this and day after day, over and over we would lay her on the couch and give her a massage and rub her tired little body. Her Nana and I would take turns doing this every few hours. There were times when we thought that Amanda was so weak that she couldn't get any weaker, but she did. Each new phase brought more tears, and when that phase would pass, we would get our hopes up again. Only for it to happen again, and again.
We vowed to try with everything in us to make Amanda as happy as we possibly could. We spent every waking moment trying to think of ways to entertain Amanda and make her life better. We turned to God for guidance and he was with us every step of the way. You honestly could feel his presence. We prayed about every action and every decision and every problem that we faced in caring for Amanda and God always showed us the way.
Amanda was such a special baby and touched the heart of everyone who met her. We would have people stop us in the stores and admire her and comment on her beauty. The was just something special about her that drew people to her. Her eyes seemed to tell you something. I called her "Our Little Breath of Heaven" because when you were near her, you felt as though you had a tiny glimpse of what Heaven is like. You could feel the love all around this little baby.
We went through about a month thinking that it was over. She was so bad during this time that she wouldn't lay in her bed. Her Nana and I took turns holding her around the clock for three weeks. Different family members would come over and sit with us, but Amanda wouldn't let anyone but her Nana, Daddy and me hold her. It was hard to hold her because you had to support her whole body and she was getting weaker and weaker and more and more limp. We knew our time with Amanda was getting short and we were entering the last stages of our life with our precious little Angel. We tried to memorize everything about her, her special little looks, her smiles, her little arms moving to the music, her sweet little baby smell. How could we live without our Angel Amanda? She had become the light of our lives, our reason for living. How could we face losing this precious little angel who had touched our hearts in a way that is indescribable? What could we do to stop the pain in our hearts? We turned to the only source of help that was available. We turned to God.
Amanda was choking a lot now and we had to use a suction machine. She was so good about this and soon learned to suction herself. She could do a better job than we could because she knew just where she needed to put the tube. She was such a smart little girl. Children with SMA do tend to be above average in intelligence.
Randy took a three month family leave from his job to be with Amanda and to help us with her care. She loved for her Daddy to carry her around and would get this special look on her face when he was holding her. He made up games to play with her and spent hours playing with her. She adored her daddy.
Amanda contined to get worse and was in pain so the doctors put her on medication for pain and muscle spasms. This helped her so much and made it easier for her to eat and breath. She even began to talk a little and was eating much better since we found a special bottle (the Haberman Feeder) that worked by the movement of her mouth and she didn't have to suck. She was on oxygen as needed.
On May 25, 1996, Amanda got choked real bad. It was a nightmare. You could see the fear in her eyes as she struggled to breath. We worked with her and finally she was ok; but the next day she woke up with a high fever. This was the beginning of the end. Her kidneys shut down and she refused to eat. She just slept in our arms. By Wednesday the doctor told us that she had about three days to live. We were so sad but we were also ready for the Lord to take her from her pain and suffering.
On Friday morning she woke up and smiled for me and even took an ounce of tea. She clung to me and seemed to be trying to make me smile and be happy. This was short-lived and Amanda again got worse. She seemed to feel pain when we would hold her but when we would lay her on her little bed, she would immediately go to sleep. We sat by her bed and watched over her and prayed.
My cousin came down from Nashville and stayed with us to help care for her through this time. She worked at Vanderbilt Hospital on the floor with terminally ill children, so she was a God-sent for us. She was able to give Amanda's medication without waking her. She stayed with us until the end.
Amanda woke up around five a.m. Saturday June, 1, and called for her Nana, and so I sent for her. She came in and I picked Amanda up and handed her to her. She held her for about an hour or so, then we decided that Amanda was more comfortable lying down. So we laid her back down. After that, Amanda slept and was no longer in pain. You could feel the presence of God in the room as this little angel lay dying. Her Daddy, Nana, Granddaddy and I sat on the floor and each held her. Many of Amanda's Aunts, Uncles and cousins were there in the room. At 10:09 am on Saturday, June 1, 1996, Amanda opened her eyes one more time, smiled at everyone in the room then, closed her eyes, sighed and went to Heaven.
I'll never forget My Little Angel Amanda. I thank God for every day that I was allowed to share in her short eighteen months here on earth. I'll never stop crying; I'll never stop hurting; I'll never stop missing her and I'll never stop loving My Little Angel Amanda.
Source: www.our-sma-angels.com |
