San Antonio, Texas
Stephanie was my first child, born January 7, 1985 in Iowa. Her father and I were both 21 years old and had not been married very long. My pregnancy with her was really uneventful. The only problem the doctor saw was lack of weight gain on my part and was worried that the baby wasn't growing.
The doctor came to my room about 6:00 that evening to tell me that he had just examined the baby. Her father had just left the hospital to go home for awhile and so I was alone. He told me that she had signs of DS, he proceeded to tell me what the signs were. I was very unfamiliar with DS and the thought never crossed my mind that there could possibly be anything wrong with her. He told me that a blood test would be run and that we would get the results in about a week. I called my husband immediately and he came back down to the hospital. We then called all our family to tell them the news. He blamed himself and thought God was punishing him for making fun of his cousin who was also DS.
I divorced Stephanie's father when she was 9 months old. He had the hardest time accepting her. To me, she was the prettiest, cutest, smartest little girl full of potential. Her grandmother (her father's mother) told me that she was an angel sent by God, because she would never commit any mortal sin and she would have a direct link to Him. She was right!
Stephanie and I became a team. We were out to show the world that DS people were people too. I was unaware at the time that she had MDS, but I couldn't figure out why she sometimes didn't look DS. Most of her teachers commented on how high functioning she was. I just figured we were blessed with a smart one. I never treated Stephanie any different than I would any other child. I have raised her as if she were normal and there have never been any excuses as to why she can't do something.
I eventually married again (and since divorced) and had another child in 1992. Stephanie adores her little brother, Alex. He is now 9 and her protector. He can be critical of her, but would never say anything mean. Most of the time, it's for her own good! In 1996, the three of us moved to San Antonio, Texas and live near my parents. They have become very close to Stephanie and Alex and we love having them a part of our lives.
In 1999, Stephanie was in the hospital after a motor vehicle accident and one of the attending doctors came in with about 10 residents. She asked my permission for them to see Stephanie because of her rare type of DS. I was confused and asked what rare type. The doctor then explained to the students (and me) what the differences were with MDS. She pointed out some of the characteristics that Stephanie didn't have. She also explained that not all cells had the extra chromosome and that she could have 50/50 cells affected. Well, you can imagine my surprise and yet that explained why she never had any health problems, no heart problems and why she was so highly functional in some areas.
Stephanie is now a sophomore in high school. She is the first special education student to ever be on the Pep Squad at her high school. She has made DS very visible to a student body of 2,800. One day I was praising the girls in her dance class for their patience and help with Stephanie. The dance director told me after that Stephanie has done so much for all those girls, she has shown them that it is okay to be different. I just wanted to cry. Stephanie has found her niche, she loves to dance! She informed me the other day that she wants to try out for the high school's dance team next year. I, of course, want to prepare her for rejection, but the teacher told me that she thinks she has a very good chance of making it. She is the most committed student in her class and she sees the potential Stephanie has.
Stephanie loves music and singing (only in her room!). She has all the posters of Backstreet Boys, N'SYNC, Britney Spears and a bulletin board full of her high school stuff in her room, sounds like a normal teenage girl! She loves to shop so she can buy clothes, the flare jeans are her favorite. She is in Special Olympics in bowling, basketball, track and field, and she wants to swim. She also plays on a softball team (Challenger League). Most of all, Stephanie loves to socialize. She loves having many, many friends. And, of course, she loves her mom and brother, too!
I would love to hear from others, new and old parents! I feel like I am a new parent now that I know about MDS. I am struggling to find all the information I can find. Please comment below.
I divorced Stephanie's father when she was 9 months old. He had the hardest time accepting her. To me, she was the prettiest, cutest, smartest little girl full of potential. Her grandmother (her father's mother) told me that she was an angel sent by God, because she would never commit any mortal sin and she would have a direct link to Him. She was right!
Stephanie and I became a team. We were out to show the world that DS people were people too. I was unaware at the time that she had MDS, but I couldn't figure out why she sometimes didn't look DS. Most of her teachers commented on how high functioning she was. I just figured we were blessed with a smart one. I never treated Stephanie any different than I would any other child. I have raised her as if she were normal and there have never been any excuses as to why she can't do something.
I eventually married again (and since divorced) and had another child in 1992. Stephanie adores her little brother, Alex. He is now 9 and her protector. He can be critical of her, but would never say anything mean. Most of the time, it's for her own good! In 1996, the three of us moved to San Antonio, Texas and live near my parents. They have become very close to Stephanie and Alex and we love having them a part of our lives.
In 1999, Stephanie was in the hospital after a motor vehicle accident and one of the attending doctors came in with about 10 residents. She asked my permission for them to see Stephanie because of her rare type of DS. I was confused and asked what rare type. The doctor then explained to the students (and me) what the differences were with MDS. She pointed out some of the characteristics that Stephanie didn't have. She also explained that not all cells had the extra chromosome and that she could have 50/50 cells affected. Well, you can imagine my surprise and yet that explained why she never had any health problems, no heart problems and why she was so highly functional in some areas.
Stephanie is now a sophomore in high school. She is the first special education student to ever be on the Pep Squad at her high school. She has made DS very visible to a student body of 2,800. One day I was praising the girls in her dance class for their patience and help with Stephanie. The dance director told me after that Stephanie has done so much for all those girls, she has shown them that it is okay to be different. I just wanted to cry. Stephanie has found her niche, she loves to dance! She informed me the other day that she wants to try out for the high school's dance team next year. I, of course, want to prepare her for rejection, but the teacher told me that she thinks she has a very good chance of making it. She is the most committed student in her class and she sees the potential Stephanie has.
Stephanie loves music and singing (only in her room!). She has all the posters of Backstreet Boys, N'SYNC, Britney Spears and a bulletin board full of her high school stuff in her room, sounds like a normal teenage girl! She loves to shop so she can buy clothes, the flare jeans are her favorite. She is in Special Olympics in bowling, basketball, track and field, and she wants to swim. She also plays on a softball team (Challenger League). Most of all, Stephanie loves to socialize. She loves having many, many friends. And, of course, she loves her mom and brother, too!
I would love to hear from others, new and old parents! I feel like I am a new parent now that I know about MDS. I am struggling to find all the information I can find. Please comment below.
RSS Feed
