Last year the Children’s Hospital of Boston conducted a study involving individuals who lives were affected by Down Syndrome. Here are some of the findings…
The first study evaluated parents or guardians. Out of 2,094 adults they found that 99% of parents loved their child with DS, 79% felt their lives were more positive and happy because of their child, 4% said they sometimes felt embarrassed by their child
The second study evaluated siblings. Out of 822 brothers and sister 94% expressed feeling proud of their DS sibling, 7% felt embarrassed, 4 would “trade their sibling” for another, 88% said they were better people because of their sibling with Down syndrome
The third study evaluated individuals with Down Syndrome. 99% said they were happy with their lives, 97% liked who they were, 96% liked how they look, 86% made friends easily, 4% expressed sadness over their lives
This study proves what so many have expressed to me and Louis since David’s diagnosis – that the Down syndrome experience is overwhelmingly positive. I look at these studies, and I do wonder about the small percent who are unhappy – but if we polled these same individuals and asked them about their “normal” children or siblings I’m sure the percentages would look the same or be even higher. Go back and read the third study. Look at the high percentages – how many of us could report we are happy with our lives? or that we like the way we look? or that we like who we are?
I worry about David and him being accepted and loved, but if this study is true he will be more happy than I can imagine. What mother wouldn’t wish that for their child. I believe one reason God gave me David is to make me realize that true happiness is not found in how we look or how smart we are or how accepted by others we might be. I pray David’s life will make me happier, more positive, more fulfilled, more enlightened, and more thankful for the true gift David is.
A few weeks ago our family, my sister’s family, my mom, and Sarah Hardy packed up and headed south for Orange Beach, Alabama. I LOVE the ocean, and I had been telling Louis that once heart surgery was complete we were traveling to the beach to rest and recover – HA! What was I thinking…I have two children. My romantic idea of sitting on the beach listening to the waves, reading a good book, and relaxing was shattered shortly after we arrived. We had a blast, but my relaxing vacation days are over for a while…and that is just fine. It’s been a family tradition since our beach going days began that the first stop is always Cracker Barrel. We filled up on biscuits, pancakes, bacon and eggs, and hoped this big meal would make all the kids pass out for the remainder of the trip…our plan didn’t work.
Lily and Charlie
Nora and Lily
Our days consisted of lazy, balcony sitting, coffee drinking mornings that were followed by trips to the pools, lazy river, or beach. Lily is a cautious child. With her arm floats and ring she would enter the 1 foot deep kiddy pool and yell, “Mama, look how brave I am.” It made me laugh.
We went to Lulu’s for dinner. This is a great place for the kiddos.
We went to an alligator farm which proved to be a neat adventure. The kids got to pet and feed the alligators. We went during a feeding time and watched as they fed an entire pig to the alligators.
…did I mention that Lily is a cautious child? Our next stop was Lambert’s where the rolls are as large as a child’s head – literally.
Louis joined us at the end of the week, and we were all thrilled to see him.
Overall, we had a great vacation! We ended the week with breakfast at Tacky Jacks.
The National Down Syndrome Society (NDSS) has declared October as Down Syndrome Awareness month. NDSS kicks off the month in New York’s Time Square with a Buddy Walk and huge celebration. Before David was born I knew very little about DS. This month I want to include post that are both informative and inspirational.
Here are some quick facts about Down Syndrome:
~Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This extra gene can be passed from either mother (95%) or father (5%).
~1 in every 691 babies in the United States are born with Down Syndrome. There are 400,000 individuals living in the US with DS and 6,000 babies.
~80% of children born with DS have mothers under the age of 35
~there are three types of DS. Trisomy 21 is the most common accounting for 95% of DS cases. Instead of the usual two copies of the 21st chromosome trisomy 21 individuals have three copies of the chromosome.
~In 1866 an English physician, John Langdon Down, published a study on individuals with the extra chromosome. He is now considered the “father” of the syndrome.
~common physical traits include: slanted eyes, short stature, low muscle tone, a single deep crease across the palm of the hand
David has the most common type of DS – trisomy 21. Here he is at the beach showing off his extra gene.