Sisters are such a true blessing to any family. I am fortunate enough to have three older sisters. Each one with their own unique quality. One who inspired me to follow my dreams and achieve my goals. One who shares of herself so completely and shows passion and love for those less fortunate. And one who shows wisdom beyond her years, humor in everything and never sweats the small stuff.
After my diagnosis, my oldest sister Kathy came to visit. I was so worried of what she thought of me. I viewed myself as a failure for not being able to carry a "typical" child. I though she would look at me with pity but, of course I was wrong. Kathy didn't treat me any differently than she always had. I still wasn't feeling comfortable in my own skin though. I asked Kathy what she had thought of the diagnosis. She talked about how nothing phases her anymore and that no matter what, this child will be a blessing.
Early on in my pregnancy I worried about the sister Lilly would have. I felt that she would never be able to have the sisterly bond I share with my sisters. I waited to tell Lilly that she was having a sister until I was 24 weeks. I took her to my doctors appointment. Lilly sat next to me on the table as the doctor used the ultrasound machine to view the baby. Her eyes lit up with delight as she proudly told the doctor that the baby was her sister.
When we got home, my mom asked how the appointment went and Lilly said: "It was awesome Mom Mom, the doctor put a magic wand on mommy's belly and I got to see my baby sister. I saw her tummy, her feet and her face." A week after, I would still catch her telling the story to her friends at school. Since then I stopped thinking that Lilly wouldn't have a wonderful relationship with her sister. Sure, it may be different than the relationship I have with my sisters but, it will be just as rich and beautiful.
There is so much information on Down syndrome and I don't want to overwhelm (okay... bore you) so, I'm just going to highlight what I feel is important to know.
Terminology
Here is a list of terms that are no longer used when referring to a person with Ds:
- Down syndrome child
- Down's/Downs baby
- Downsy (ugh... I hate that one).
- He/she suffers from Down syndrome or is afflicted by Down syndrome (It is a diagnosis not a disease, people do not suffer from Ds).
- Mental retardation (although medically acceptable, it's social unacceptable)
- And of course... retard
List of terms that are used when referring to a person with Ds:
- A person with Down syndrome
- cognitive disability
- cognitive impairment
- intellectual impairment
- intellectual disability
- developmental delay
These terms can be found on the National Down Syndrome Society and the National Down Syndrome Congress website.
Statistics
The following statistics are from a study conducted by three physicians from Children's Hospital of Boston which was published in the American Journal of Medical Genetics
Here are the findings from the first study which surveyed the parents and guardians of people with Down syndrome:
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99 percent of parent/guardians said they loved their child with Down syndrome
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79 percent felt their outlook on life was more positive because of their child
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5 percent felt embarrassed by their child
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4 percent regretted having their child
The second study surveyed the response from siblings of people with Ds:
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94 percent expressed feelings of pride about their sibling
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7 percent felt embarrassed by their sibling
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4 percent would “trade their sibling in” for another
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88 percent said they felt they were better people because of their sibling with Down syndrome
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97 percent said they loved their sibling
- 90 percent felt their friends are comfortable around their siblings
The final study surveyed the response of people with Down syndrome:
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99 percent said they were happy with their lives
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97 percent liked who they are
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96 percent liked how they look
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86 percent indicated they could make friends easily
- 4 percent expressed sadness about their life.
Okay, since we all know a Ds diagnosis is not a life filled with rainbows and unicorns, I'll move on to the medical statistics.
MEDICAL STATISTICS:
- 80% of all Down syndrome babies are born to women under 35
- One in every 691 babies in the United States is born with Down syndrome.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
These statistics were taken from the NDSS website
LASTLY... There is a booklet called "Your Loved One is having a Baby with Down Syndrome." It is from the Down Syndrome Pregnancy website. It's a quick read, packed with useful information. It will only take 10 minutes to read and I implore you to read it.
Booklet for Family and Friends
Thanks for reading!
Love,
Nancy
