Is it really a win? or did you already win before the results came back

        You know I always read things about a "DS diagnosis scare" and how relieved the parents feel when the test reveals no DS. For a second I hate their joy. Why is it such a grand celebration that their child doesn't have DS. Is Down syndrome still viewed so negatively that people still hate the idea of their child "suffering". I now realize that it is a relief that they will not have to live the life of pt, ot, speech, IEPs, IFSPs, specialists, surgeries, scheduled testing, etc. A life we all just accept and love. A life that is not scary, but is time consuming and at times frustrating. A life we all so greatly adore living, but wouldn't have if the test came back negative. It isn't a relief of not having to have a child with Down syndrome-- it is a relief that you don't have to learn so much, do certain things, a relief that life will not be slightly different now.

   Down syndrome does equal change- and I will continue to work towards a world that is accepting and loving. But having felt this relief I will now accept that a negative karyotype test can equal a win for a family so ready to have accepted our life & their child, but that they are grateful that they don't need to follow the doctor's very precise set schedule for children with DS.

   I beg that each family who waited for further tests to confirm or dismiss Down syndrome take that opportunity to learn more about our subculture, to enlighten yourself to the great possibilities our children have. Even though your child does not have Down syndrome, you have a unique opportunity to peak inside our world. Please cherish that opportunity as you resume life as a parent.

   You are the closest people to have empathy to our situation. Far too many people who work in the field of disability have a false sense of empathy, yet have never experienced a life with disability. Far too many people who work with individuals whom have a disability will say "well I know this or that because I work with them"-- but they often times are wrong. Please use this experience to enlighten yourself and respect all of those who don't get "a pass" and resume their lives with Down syndrome. I am blessed and happy to say that I adore Raven and all 47 Chromosomes that she has, but I am not naive to say that life would be the same had she only had 46. I have spent 5 years in this subculture, and I am proud to say I truly think our lives are better because

  1. She has more of her mother's genes than her daddy's (and well Im egocentric so This makes me happy!)

  2. She is such a charming, pleasant little girl, with spunk and rebellion. She is not always happy (that is a myth) but she is very well manner and comical. She has a sense about people that kids with only 46 chromies don't have.

  3. She is blessed with the best specialist in the country. They are very proactive, which gives her mommy (who has anxiety) a great sense of peace. Far too many children don't have medical insurance/ don't get testing done when they should/ go undiagnosed/ have heart defects that are never caught/ don't have specialists pushing them to their greatest success

  4. We are never alone- we are surrounded by the best support group, in our town/state/country and world. We have specialists who truly helped me be the best parent I could be, I have friends that are there for me and my family, day and night, We have so many books written by professionals and also parents, that guide our paths.

  5 We know what each accomplishment means. We never, not even for a second, take our children for granted. We encourage accomplishments of others, we receive so many well wishes, cheers, praises, laughter, and also empathy from friends around the world. When our children learn to walk it is celebrate in all corners of the world. Children without DS do not get this grand attention or celebration. Often times their parents don't even recognize how hard they have worked to master that skill.

   Our lives aren't bad, miserable, terrible, scary or anything else. They are wonderful, blessed, happy, and yes at times frustrating, difficult, and different. Instead of looking at this as a dodged bullet, please look at it as an opportunity to learn, feel, recognize, understand. No parent could ever know the struggles their child will face. A child without Down syndrome could get in an accident, could do drugs, could become a criminal (even a murderer). The great thing about having a child with DS is that we have research that says our child will most likely Not do drugs or commit crimes. They tend to not drink, so bye bye alcoholism :-)  

   We each have our own struggles that life brings us. Ours happens to center around Down syndrome, but I promise you, ours doesn't end there--- we have so much more to contribute. If you sought a friend while pregnant, searching for information or to meet their child, please keep them even if your child doesn't have ds. You'll quickly discover their compassion and friendship wasn't only offered because you thought your child had Down syndrome. They too are parents. We all have more in common than people may think. We are not on separate teams. We were there when you thought you needed us, but we will also be there when you forget you still need, simply, a friend.