Updated: Sep 1, 2020
I am a mom of two beautiful girls and a handsome stepson. I'm also the wife to a wonderful man who loves me in spite of my stubborn streak and keeps from being too serious. My oldest, Madison, was born with Mosaic Down Syndrome in 2005. She is my angel, my heart, and the sassiest girl on the planet, in my opinion. When she was born her father and I were told that it seemed to the pediatrician that our daughter had Down Syndrome. That's not possible! I'm 24 years old, healthy, and this is my first child. We thought they had to be wrong. Two weeks later we were given the news that the blood test was positive even though we could not see any physical features of the syndrome. It wasn't until she was 3 months old that her heart surgeon told us that she had Mosaicism. We had no idea what that was or that it would mean that our daughter and us would become not only part of the minority of special needs but a sub-minority group within that of only 3-4% of people in the world. Doctors, therapists, nurses, teachers, organizations; none of these groups knew or to this day really have any knowledge about her condition or how to treat her or how to teach her as she is at a higher level of social and intellectual abilities than what is typical of Down Syndrome. I have always had to be an advocate, medical assistant in a manner speaking, and fighter for her in every aspect of life to keep her being held back by being treated as a typical child of Down Syndrome. It has made life wild and crazy but also absolutely wonderful because I am constantly able to cheer as she tears down the stereotypes of what people think is "typical" for DS. My blogs will talk more about this rare and unique division of DS and I hope you give it a try as it is still practically devoid of any knowledge. My dream is to find a way to create enough time and energy to brand an awareness program to help those with this condition who could have the possibility to live full lives the way advocates for autism have made it for them if anyone thought to pay attention to these high functioning kids being lumped together with typical DS kids who they can't relate to.
My youngest is two years old and absolutely NEVER stops. She has the energy of all three of my kids put together and is way too smart for this age. I literally have had to stop 10 times in writing this post to turn the kitchen faucet off, take a meat thermometer away from her, as well as anything she can possibly grab or get into because she is also super tall. She will also fill many crazy stories in my blogs for sure. My stepson is six years old and such a little gentleman. I've known him half his life and I'm proud that I am able to be an influence in his life to help him grow into the great man I know he will be. He also is wonderful at helping me wrangle his baby sister in when she starts climbing the windowsills and everything else. So I hope you will enjoy and return to this blog from time to time as I plan to at least post one blog on something funny, crazy, sad, or whatever seems interesting to me that I feel like sharing. Also I plan to post at least one informative video or link to information to help grow awareness of special needs for Mosaicism but also other special needs because I have always believed that "special" does not mean a person is less able but that they can be the same as others but the way to unlock it requires a "special way". God Bless and welcome!