Finding Passion (Guest post)

Today's blog post is by one of my friends, Emily.  She is a member of the (Extra)Ordinary group.  It is our 2011 subgroup of our local Down syndrome association.  Her daughter, Nora, and her twin, Katie, are two days younger than Hailey.  She is a phenomenal mom who always seems to have it together and seems so calm handling her 4 young children.   Enjoy!!

I was always jealous of people who had a passion that drove their life. My best friend is passionate about everything, and always seems to be doing great things. Another dear college friend is a pastor and has been serving others since the day we met.

When Nora came into our lives in February of 2011 I was thrown off kilter. We knew about her heart condition, and had had a conversation with a genetic counselor while pregnant, but hadn’t put too much thought to what Down syndrome was or would mean to our family. I knew right when I saw her – those eyes told me immediately. And it’s not that I jumped for joy, I was sad with the possibility and a few days later the confirmation. But I am an optimist to my core and knew no matter how I felt about it, it’s not something I could change, so I started to learn about what it would me to us. Three and half years later it has given me more than I could have imagined.

I hope others can see the passion in me as well, and that it’s not too overwhelming when I do share. Like many parents to children with special needs, I am excited to teach the world all about Down syndrome and why it’s really not as scary as it may seem at first. On behalf of Nora and other individuals with special needs I learned more about government than I ever recall from high school by serving on the Government Affairs Committee for the Down Syndrome Association of Greater Cincinnati including travelling DC to meet with congressmen and encourage them to pass legislation (the ABLE Act - https://www.congress.gov/bill/113th-congress/house-bill/647), I worked for two years to network and land a job with Cincinnati Children’s Hospital so I am now helping to “improve the outcome” for many families, I am a member of the Family Affairs Committee for the Division of Developmental and Behavioral Pediatrics for CCHMC, I am taking part in local level government on the County Board of Developmental Disabilities, I am advocating for Nora and becoming an expert on her IEP. All of this, and more, because of one little girl.

And I am not a super mom, I am just a regular mom who has found her passion – and it feels great.

And before I go, just a touch of my passion in form of Down syndrome Facts: Did you know?

* The correct terminology is Down syndrome. There is no apostrophe and there is no capital “s” in syndrome. The syndrome is named after the physician, Dr. John Langdon Down, who identified the common characteristics as a syndrome in 1866. A child with this condition is a child with Down syndrome, not a Down’s child or the Down’s kid in Mrs. Thompson’s class. Parents greatly appreciate your sensitivity when you address their child as a “person first” and not merely as a syndrome.
* The average age of a mother giving birth to a baby with Down syndrome is 28, 80% are under 35. (see #1 ref below)
* Most people with Down syndrome have some degree of intellectual disability, however, it usually falls into the mild to moderate range and is NOT indicative of the many strengths and talents each individual possesses.
* People with Down syndrome are not always happy. They have feelings just like everyone else. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior.
* Down syndrome is the most commonly occurring chromosomal condition. It occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes characteristics associated with Down syndrome. Down syndrome occurs in all races and economic levels.
* Individuals with Down syndrome have higher rates of Alzheimer’s Disease. The 21st chromosome contains the APP gene which produces amyloid precursor protein (APP). This gene causes APP to be produced and form beta-amyloid plaques which are characteristic in the brains of individuals with Alzheimer’s. Starting in infancy, individuals with Down syndrome produce lots of APP. By middle age the accumulated plaques wreak biological havoc on the brain. There are currently two clinical trials underway with people who have Down syndrome through NIH to study drugs that may limit, and hopefully even stop, the effects of this plaque and the resulting Alzheimer’s. (see #2 ref below)

References: # 1 http://www.dsnmc.org/wp-content/uploads/2011/01/DSNMCEducationResourceGuide.pdf #2 http://www.nia.nih.gov/alzheimers/features/researchers-seek-alzheimers-clues-people-down-syndrome