Support Groups

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DSAM Day 29: Disclaimer- Lily has Down syndrome

What is Normal?

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I recently heard a quote that, “Normal is just a setting on a dryer.” When I was in middle school I wanted to be normal. When I was in high school, I wanted to be different. As an adult I just want to be me.

One of the first things I learned from the Down syndrome community was how not to offend people by using the ‘wrong’ words. This is where I was told that the word normal is rude and offensive. The proper word to use when describing other children that did not have DS, was ‘typical’. The linguist in me immediately began analyzing what the words actually meant and which word was in fact more appropriate within the context I would refer to. The other part of me rolled my eyes.

I believe in educating people and being tolerant of those that differ from you in whatever way. I believe in being respectful. But I also realize that the majority of ‘typical’ people are not trying to be hurtful, degrading or intolerant when they misspeak.

I personally am not offended when people use the word, normal, to refer to children that do not have DS. When you ask someone what normal is most often they will laugh and say well nobody and nothing is really NORMAL. I still refer to other children as normal, knowing full well that there is no normal when it comes to humans or animals.

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I have noticed how difficult and awkward it is for people to ask questions and speak about Lily having DS. Most people seem so afraid that in their ignorance of DS, they will offend me and thus end up in an uncomfortable or embarrassing encounter so they look but don’t say anything or they speak around the topic. I believe there is merit in learning to lighten up a little- it is more important to me to normalize discussing DS then it is for people to use the correct terminology. I appreciate so much when people come up to me and ask does your daughter have DS? To me that gets rid of the stigma that Down syndrome is hush hush and something bad that we can’t ask about.

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In my almost 2 years of being Lily’s mom, I have learned that the more friendly and open I am about Lily, the more relaxed and forthcoming others are. When Lily and I are out and about, we are approached, often several times, by people wanting to extend their hellos to us and remark on what a doll Lily is. Sometimes they venture a comment regarding Down syndrome, sometimes not. I used to wonder if Lily received so much attention from strangers because they knew she had Down syndrome and were giving her ‘special’ treatment, Maybe they are and maybe they aren’t- Oz seems to generate quite a bit of attention for himself too- perhaps its because I have very happy, outgoing, and friendly children- who wouldn’t want to stop and enjoy a little of that? 🙂

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Now I am not saying that I do not sometimes feel offended or even hurt, I have days that I am much more sensitive about things than others. However, I return to the bigger picture. A world where Lily can evolve as herself, in the wide open, around all the ‘normal’ people without any hushed disclaimers.

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DSAM Day 28: A Silent Question Answered
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DSAM Day 28: A Silent Question Answered

A question I have never been asked (at least by those without a child with Down syndrome)–

What was it like to receive the diagnosis that our child will have Down syndrome?

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Most of you know me fairly well with regards to my attitude about Lily and Down syndrome. I have been complimented countless times on how strong I am and what a great attitude I have-  and yes I am strong and yes I do have a great attitude. But it wasn’t that way in the beginning……

At our 16 week ultrasound we found out we were having a little girl. Shortly after learning that, we also learned that she most likely had Down syndrome. Shortly after that we had to verbally tell our doctor that we did not want to terminate our daughter. Most know this story- what hardly anyone knows is what happened when we got home.

I don’t remember the drive home. When I got home I crumbled. I could barely walk, I couldn’t think past my emotions. I only knew and understood one thing: I am not killing my daughter- I want her so badly and we tried so hard. Like most people, I have my own personal relationship with God with its ups and downs, some moments more faith-filled than others. On my knees I asked Him, Why me? I don’t deserve this. Why my child? Those questions escalated into more of a How dare you? sort of flair. No need for me to go into more detail here – you all understand. When my declarations to God were over – I decided to do some research.

I will admit – the very first thing I did was google pictures of people with Down syndrome. Looking at some of the photos that popped up and reading about all the problems and especially reading the words, “mentally retarded”– I just died inside. I felt like all the air in the world was gone, someone had punched me in the gut and was now sitting on my chest. The world spun, and I couldn’t hang on- I wanted to wake up from this nightmare. I was trapped in an unfamiliar part of my mind and I was clawing my way back to a reality I had once known but no longer existed. There was no way out, no escape, nothing but unbridled, uncontrollable terror.

I began grieving for the child I thought I was going to have, I grieved for myself. I grieved for the baby I was carrying. I grieved for 3 days. I cried for 3 days. Then the tears dried up and I ended my silent treatment toward God.

I remember sitting and holding my belly and praying to God to let her be okay, let her be okay, let her be okay. I sought refuge in my prayer and comfort in my husband.

Then I forgot all about it. (yep, I really did). I continued on with my pregnancy without much thought toward her maybe having DS.

The day Lily was born was well, wow. The doctor told me right away that she looked like she had Down syndrome. As we waited for the chromosome test, I would stare at her trying to decide if she ‘looked’ like she had Downs or not. Some moments yes, others no. They explained to me the features they saw but it was hard to see.

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I was sitting in the NICU when 3 doctors, 2 nurses and a social worker entered our room. Lily was asleep in my arms, I was in heaven.  They told me the results were in and she does in fact have Down syndrome. The tears slid down my face before I could stop them. This time though, it was different. This time I could look at my daughter, feel her, hold her, breathe her in.

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I knew God had indeed answered my prayers, she was okay. Almost as soon as the tears began they ended. I no longer cared. I no longer feared. I just felt peaceful- I was a mommy. I had a little girl. She is perfect.

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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

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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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