Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our“framily”who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported 埃维 for the Buddy Walk this year! We love you and appreciate you!
Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with 唐氏综合症. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people with DS in certain countries. For me and 埃维, our goal is to raise 意识 and show the joy in being a homie with an extra chromie!
Day 9 DS Awareness: Since the 1970’s, public schools have had to by law provide a free and appropriate education to individuals with 唐氏综合症. We already see the benefits of this, and evie is only in 学前班! And apparently she likes chess! Thanks for supporting public school education. They are pivotal for our children and our future,no matter who they are or where they are.
DS Awareness Day 10: Being included is priceless. 埃维 is fully included in her 学前班 class with appropriate assistance so that she can participate. These include an aide for safety, a special chair for support, and an electronic 通讯 device (NOVA Chat). 埃维 loves being included, and just blossoms when she goes to school! Scroll for your daily evie pic!
DS Awareness Day 11: Babies with DS often spend some time in the NICU for various reasons. 埃维 was admitted for heart defects, 肺动脉高压, and failure to gain weight. Our NICU nurses were lifesaving in so many ways. Massachusetts is currently voting to restrict nurse to patient ratios. While I strongly support having quality care and safe boundaries (Evie’s nurses in the NICU had two patients each), the way that #1 is written would likely be more costly and impact healthcare access in a negative way. Imagine going to the ER and being told to wait or to try another hospital because they have reached capacity. I don’t know about you, but when I go to the ER for help, I like to be seen! Safe limits are important, but with such a sweeping change that gives only 37 days to enact, they need to write the regulation with more care for consequences. 埃维（Evie）说：对＃1不投反对票！
|埃维's first bath|
DS Awareness Day 12: People with 唐氏综合症 are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s scary.
DS Awareness Day 14: People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. The book that 埃维 is reading in the photo is called“I Love You for You.”It teaches various animals that they all have their own unique traits, and each one is special. This message is especially important for 埃维, but I believe all children (and adults) need to know that each person has their own unique abilities and contributions to the world. When we set apart others because they are different, we ALL lose out.