What’s In A Name?

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As a biologist, I spent several years learning the names of things and more interestingly learning that most things are named after the people that discovered their existence. This made for some very tough spelling challenges along my academic path! When I first heard the reference, Down syndrome, I wondered why is called ‘Down’?

For centuries, people with Down syndrome have been alluded to in art, literature and science. It wasn’t until the late nineteenth century, however, that John Langdon Down, an English physician, published an accurate description of a person with Down syndrome. It was this scholarly work, published in 1866, that earned Down, the recognition as the “father” of the syndrome. Although other people had previously recognized the characteristics of the syndrome, it was Down who described the condition as a distinct and separate entity.

To say that Lily is a Down’s baby is actually incorrect- she is not Dr Down’s baby- she is all mine! J

10 tiny fingers, 10 tiny toes, little ears and little nose….

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There are physical characteristics that can go along with Down Syndrome. Wider set eyes, lower set ears, shorter nasal bone, single crease on the palm, etc….are all identifying marks of DS. What you don’t see are the internal characteristics. These include smaller canals in the ears, small nasal passages and sinuses, higher than average palate, etc. This increases the chances of respiratory sickness in people with DS. They are more likely to get pneumonia, colds, bronchitis- those sorts of illnesses.

Lily has had pneumonia twice (once due to aspirating her milk) but has been extremely healthy otherwise. In February of last year, she failed her hearing test, missing the low tones. They discovered she had fluid in her ears which without tubes, would continue to build up and cause speech delays and even deafness. So we joined the ENT surgery club. Lily’s surgeon also wanted to remove her adenoids because it is very easy for them to block the ear canals creating trouble.

After much research (even outpatient surgery is not without risk) we prepared ourselves to allow our little girl to be put under anesthesia and have the tubes placed and the adenoids removed. We had been through so many scares with her that we weren’t necessarily scared but it is a little known fact that I have some control issues (I know, shocker!) and I had a very hard time just turning her over (passed out from the goofy juice) to a complete stranger. I am sure my friends that have had to endure so much more intense surgeries with their children are rolling their eyes at me right now but for that 20 minutes, I couldn’t even sit down I was so ready to run back to her! Lily did very well and was back to her normal self by that evening only now she could hear even better!

As she gets older, we begin to see her change from a baby to a little girl and that includes seeing the characteristics of Down syndrome emerge more and more. After she turned 1, people outside our circle began to ask if she had DS- at first I was taken aback. I wanted people to see her for her not just the DS. However, as I gaze at my daughter, I realize that her appearance is a beautiful blend of the DS traits and  us. I don’t think Lily is cute or pretty. I think she is stunningly beautiful. A truly unique masterpiece.

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Happiness Is….

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Happiness is a beautiful fall day and time off to enjoy it. Happiness is a hot cup of coffee, a great book and a comfy chair. Happiness is the birth of your children. Happiness for Lily is finding Elmo in the pages of her book, matching the right colors together, getting her puzzle piece to fit on the first try, hugging her friends and receiving one back, fitting all of her animals into her little toy barn, sneaking food to Molly when she thinks I am not looking.

Happiness is not Down Syndrome.

The most bizarre misconception about DS is that people with DS are always happy. I have lost count how many times I have heard this and most of the time it is the first thing people tell me about what they know of people with DS.

I will be honest, those of us with children that have DS find this to be most irritating. Speaking only for myself here, it feels like people are trying to give me a consolation prize. Almost to say that since you couldn’t win the ‘normal’ child at least they will always be happy and a joy for you. Whaaat????

What is really puzzling is to hear this from people who claim they used to work with people that have DS. There is no way someone who truly knows a person with DS can honestly think this. Unfortunately, DS does not give one super powers and does not alleviate the human condition of emotion.

Although I would love to spare my child the emotions of sadness, rejection, defeat, despair, heartache, etc, she wouldn’t be human without them and at the end of day, even people with Down syndrome are human. 🙂

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