Post by Michelle on Nov 21, 2014 10:40:04 GMT -7
I had two sons prior to having my daughter. I never worried about having any of the prenatal tests done that they offer during pregnancy. What was the point? I didn't care if there was something "wrong" with my child. I wouldn't to have an abortion or to give the baby for adoption. I expected my child to be perfectly healthy like all of us pray for.
When she was born, her ears were folding down against the side of her head. According to the doctor who delivered her, that was merely because of her running out of room in the womb. None of the nurses said there was anything out of the ordinary. The next morning when the primary children's clinic doctor came in things were different. I was told, "Your daughter is deformed. She has Downs."
I was devastated!! I was alone when I received the news. Nothing can prepare you for being told your child has Down Syndrome, especially when told like that. I'll admit, looking back, I'm ashamed of what went through my head. All I could envision was a kid that couldn't do anything for themselves. Someone I would have to take care of for the rest of my life!
At the same time, I think I was in denial. Later that day it was explained to me why it was thought she had Down Syndrome. Her eyes were almond shaped and widely spaced. She had a larger space between her big toe and second toe. She also had a larger forehead and a somewhat flat face. Her father had all of that and he didn't have Down Syndrome. The reason her ears were folded down was because the cartilage had not formed. They had to place a plastic piece in to shape them and tape them to the side of her head.
The ten day wait for her blood work to come back was stressful to say the least. It became worse when they told us they had lost the blood work. Seriously? We had to take her back in to draw more blood. When the results finally came back, they revealed she did have Down Syndrome. Trisomy 21 to be specific.
For a while, I blamed myself. I didn't take my prenatal vitamins. I had smoked cigarettes. I hadn't really paid attention to a healthy diet throughout my pregnancy. I tried to find any way I could to blame myself. In reality, there's nothing anyone does to cause their child to have Down Syndrome.
I can't say the road with my daughter has been easy. She was very tiny and didn't grow quickly. We had to use preemie nipples due to her mouth being small. She didn't eat a lot. I was lucky to get her to take half an ounce at each feeding. She's been on oxygen and hospitalized with RSV, pneumonia, and I'd swear any respiratory infection humanly possible. We call her Cat for short because she sounded just like a kitten when she cried. They've done multiple tests thinking she had one medical problem or another.
I was used to sitting in the hospital with my other two children when they were younger. They had several respiratory problems as well. What I was not used to was the negativity I constantly heard. "You'll be lucky if she's walking by the time she's 5." "She probably won't ever talk." "She can't understand what you are telling her." "She'll never be able to do patterns or learn how to add." The list of negative comments I received could go on! I'm an advocate for ALL of my children, but I'm an absolute WITCH when it comes to anyone putting down my daughter.
I realize there are things she may never be able to do. I realize there are things she may always need help with. That is NOT what I focus on. I focus on what she CAN do and she can do a lot of things. I've gotten into plenty of arguments with the school system and had to reach out to advocacy programs plenty of times.
My fondest memory is when they tried to tell me that she couldn't stay in public school. She needed to go to a program specifically for those with disabilities. They gave me all the positives of moving her. She would be with a smaller class. She would learn how to wash her hands and set a table. At this time, she was seven. She could do all of those things. I wasn't concerned with her taking care of herself. Right now, I'm there for that. I want her to get as much education as what she can and she deserves that. I retorted with every law there was concerning her right to an education IN a public school setting with as much integration as possible. When I was asked how up to date my information was, I smiled and said "about an hour before I walked in this room." That shut them up pretty quickly.
Ten years later, I wouldn't change a thing!! She's just like me She's a stubborn little pill that wants thinks her way. She's a beautiful loving little girl that's always smiling and everyone falls in love with. She's nearly always happy unless you mess with her food lol.
Two years later, I became pregnant again. The doctors wanted me to have the prenatal tests done and to undergo gene counseling. We opted not to. I didn't care if I had another child with Down Syndrome. She's a joy to everyone she comes in contact with.
While receiving the news is hard, it's not the end of the world. Those with Down Syndrome have so much to offer and even more to teach us!!
When she was born, her ears were folding down against the side of her head. According to the doctor who delivered her, that was merely because of her running out of room in the womb. None of the nurses said there was anything out of the ordinary. The next morning when the primary children's clinic doctor came in things were different. I was told, "Your daughter is deformed. She has Downs."
I was devastated!! I was alone when I received the news. Nothing can prepare you for being told your child has Down Syndrome, especially when told like that. I'll admit, looking back, I'm ashamed of what went through my head. All I could envision was a kid that couldn't do anything for themselves. Someone I would have to take care of for the rest of my life!
At the same time, I think I was in denial. Later that day it was explained to me why it was thought she had Down Syndrome. Her eyes were almond shaped and widely spaced. She had a larger space between her big toe and second toe. She also had a larger forehead and a somewhat flat face. Her father had all of that and he didn't have Down Syndrome. The reason her ears were folded down was because the cartilage had not formed. They had to place a plastic piece in to shape them and tape them to the side of her head.
The ten day wait for her blood work to come back was stressful to say the least. It became worse when they told us they had lost the blood work. Seriously? We had to take her back in to draw more blood. When the results finally came back, they revealed she did have Down Syndrome. Trisomy 21 to be specific.
For a while, I blamed myself. I didn't take my prenatal vitamins. I had smoked cigarettes. I hadn't really paid attention to a healthy diet throughout my pregnancy. I tried to find any way I could to blame myself. In reality, there's nothing anyone does to cause their child to have Down Syndrome.
I can't say the road with my daughter has been easy. She was very tiny and didn't grow quickly. We had to use preemie nipples due to her mouth being small. She didn't eat a lot. I was lucky to get her to take half an ounce at each feeding. She's been on oxygen and hospitalized with RSV, pneumonia, and I'd swear any respiratory infection humanly possible. We call her Cat for short because she sounded just like a kitten when she cried. They've done multiple tests thinking she had one medical problem or another.
I was used to sitting in the hospital with my other two children when they were younger. They had several respiratory problems as well. What I was not used to was the negativity I constantly heard. "You'll be lucky if she's walking by the time she's 5." "She probably won't ever talk." "She can't understand what you are telling her." "She'll never be able to do patterns or learn how to add." The list of negative comments I received could go on! I'm an advocate for ALL of my children, but I'm an absolute WITCH when it comes to anyone putting down my daughter.
I realize there are things she may never be able to do. I realize there are things she may always need help with. That is NOT what I focus on. I focus on what she CAN do and she can do a lot of things. I've gotten into plenty of arguments with the school system and had to reach out to advocacy programs plenty of times.
My fondest memory is when they tried to tell me that she couldn't stay in public school. She needed to go to a program specifically for those with disabilities. They gave me all the positives of moving her. She would be with a smaller class. She would learn how to wash her hands and set a table. At this time, she was seven. She could do all of those things. I wasn't concerned with her taking care of herself. Right now, I'm there for that. I want her to get as much education as what she can and she deserves that. I retorted with every law there was concerning her right to an education IN a public school setting with as much integration as possible. When I was asked how up to date my information was, I smiled and said "about an hour before I walked in this room." That shut them up pretty quickly.
Ten years later, I wouldn't change a thing!! She's just like me She's a stubborn little pill that wants thinks her way. She's a beautiful loving little girl that's always smiling and everyone falls in love with. She's nearly always happy unless you mess with her food lol.
Two years later, I became pregnant again. The doctors wanted me to have the prenatal tests done and to undergo gene counseling. We opted not to. I didn't care if I had another child with Down Syndrome. She's a joy to everyone she comes in contact with.
While receiving the news is hard, it's not the end of the world. Those with Down Syndrome have so much to offer and even more to teach us!!