Moving Rooms

Recently I moved rooms from the basement to a bedroom upstairs right next to my little sister's room. I was just on Thanksgiving break so Jillian was quite excited to have me home. Here are a few of my Facebook statuses about some of the hilarity that ensued. I'm thinking about starting a Twitter feed about things Jillian does...but don't tell my Public Relations Professor - I'll never hear the end of it.

After the 10th time my little sister has passed by my door in 20 minutes saying "Hi Julie" I'm getting the impression she is pretty pumped my room moved upstairs right next to hers. Sister love.

This morning Jillian talked loudly about me in her room till I got out of bed. The adventure continues.

It took my sister 3 minutes to blow her nose because she stopped to ask me why I had the audacity to leave my room and sit in the kitchen. Sorry I'm not sorry?

Every time I come in the front door now Jillian immediately asks me how long I will be staying at the house, just to make sure.

Every time I greet Jillian as she gets off the bus, she comes running up the driveway singing loudly "Julie, Julie, Julie do you love me! Julie, Julie, Julie do you care! Julie, Julie you drive me crazy!" (Julie Do Ya Love Me - Bobby Sherman)

What Does Reddit Say?

I was curious about what would be the first few things to come up on Reddit about Down Syndrome because it is a good way to see what people are discussing about the topic. When I have a little more time I will post my reactions to the threads. Right away, I couldn't bring myself to click on the very first thread asking if someone should abort or not. Perhaps shamefully, I was afraid what I might find.

The first few threads to pop up under "relevance" (in order):

1. Reddit, You're about to have your first child. You get a test done, and it says that your child will have bad down syndrome. It's still early enough to abort the pregnancy. Would you abort or not? Why?
2. A story about how an entire island got even on two guys harassing a girl with down syndrome.
3. I have down syndrome. AMA
4. I don't tell anyone on reddit about my Down syndrome, because I'm afraid they'll hate me.

The first few threads to pop up under "hot" in order:

1. TIL that more than 90% of women who learn that they are carrying a baby with Down Syndrome, will choose abortion over keeping their baby
2. TIL that over 90% of fetuses diagnosed with Down's Syndrome in the UK are terminated.
3. Detroit community beats alleged rapist of 15 y.o. girl with Down Syndrome after slow police response.

/r//Downsyndrome:

1. New parents of a beautiful little boy.
2. This is my blog about Stephanie, my little sister who has down syndrome. I made it to tackle the sigma and show people what a wonderful quality of life she has.
3. Is it bad that I feel very uncomfortable around people with down syndrome?

Sisters

The recent yearbook photo that my sister posed for is adorable. In fact, I begrudgingly marveled at her easy smile and perfect pose. Why couldn't my professional headshots look as nice?

Looking at the photo, I realized I couldn't see the Down syndrome in her face. I starred at the photo, studying her features, narrowing my eyes to try and single out the droopy eyes or tiny button nose characteristic of individuals with downs. But I couldn't see it. I just saw my sister looking beautiful.

Jillian is just Jillian to me and I have to constantly try to remind myself that other people do not see through my eyes. My love, respect and knowledge of her guides my perception of her. Honestly I feel a little agitated that it can't be that simple for everyone, but I do understand.

To me, having a child with down syndrome isn't having a child with downs. It's just having a child.

More Alike Than Different

Here is a good video I stumbled across. It's a good starting point to understand what the lives of people with Down Syndrome are really like.

Backing Up

I just posted something but then realized I never properly introduced myself and my sisters!

My little sister Jillian is 12 years old. My older sister Jordan is 25 and I am 21.

My parents did not believe in prenatal test for Down Syndrome, so when Jillian was born it was a surprise. I hope to soon post about my parents thoughts at her birth, but I would really like to talk to them both again before I tell their stories.

For my part, I don't remember even a single negative thought regarding Jillian's Down Syndrome, but perhaps that was because she was so ill when she was born. She was in intensive care for a number of days. All I remember was pressing my face against a viewing window hoping to catch a glimpse of her. My Dad, older sister and I even stood outside the hospital window and trampled the plants in hopes of seeing her. I  had lost a little brother at birth when I was seven, so I think all my thoughts were turned on her survival.

Luckily, she did survive. But barely. Over the next 3 months she rapidly lost weight. She had a feeding tube up her nose that was connected to a food bag. Everywhere she went in the house someone had to wheel around her feeding tube bag. We had a scale in the kitchen to weigh her regularly. Looking back, I can't help but imagine how intensely difficult it must have been for my parents to watch their little baby literally fad away to nothing. I admire them both deeply for their strength.

My parents also told me that before her heart surgery she didn't smile or respond to any contact. My mom, who didn't know very much about Down Syndrome, truly feared her child would be a vegetable. But miraculously, after her dangerous heart surgery at 3 months old, she came alive. I've never fully understood how patching up two holes in her heart could have such an effect.

The thing I remember most from this period is being extremely frustrated that I could not hold her. The muscles in her neck were so weak her head just flopped about lifelessly, so I couldn't hold her without the support of a mountain of pillows surrounding us. Although it sounds kind of lame, I think that's why I ended up holding her when she was far too old to be held. She didn't seem to mind at least. :)

Fast forward 12 years, she is now a healthy, hilarious and animated girl. She is really a one of a kind individual, the type of person that you meet and never forget.

She is a comedian, perhaps above all other things. She loves to laugh and make others laugh with her. She is an avid gamer, especially Minecraft. She knows any movie reference you might happen to throw at her, and she will never forget a face. I will tell many a humorous tale as I go along in the blog.

So for now, that is a little introduction to the beginning of Jillian's life.

A Dad's Confession

This video has sparked a lot of thought for me. It's about a father who wrote a confession letter to his daughter with down syndrome letting her know that he wanted to abort her, but has since realized what a grave mistake that would have been. He grew to deeply love his daughter and ran with her in races until he reached 321 miles.

I'm surprised to see some of the Youtube comments being so negative and calling the father a murderer. Far from it. The society he grew up in helped to shape the opinions he had that led him to want an abortion. It's a strange thing that we live in a society that makes it difficult to love.

Often people say they are afraid of the unknown. It's a little funny to me then that families are afraid when they are told their child will have Down Syndrome, because it is a known thing. You know more specifics about your child than you would if you had a "normal" child. I know that isn't entirely the case but it did get me thinking about it.

I read another article (Here) with a similar theme. There were two quotes that really stood out for me.

"...But the reality was the only thing keeping me from loving my daughter was my own ignorance".

Beautifully said.

"Before our summer break, she passed an entrance exam to start at a British preschool in September with her peers who are not labeled as "special-needs children." In my opinion, these limitations we put on children with Down syndrome are outdated and lead to a lack of acceptance in our society".

SO well said. Society has started to realize that people with Down Syndrome are capable of far more than originally thought. This is simply because we weren't taking the time to notice!

The Start

Welcome! This is both a welcome for you and for me. My name is Julie and I have a younger sister with down syndrome. Because of this, I have decided to embark on a new blog that centers around special needs individuals. I want to incorporate current special needs issues and personal and found family stories. Perhaps this blog will be a comfort for other families with a special needs child, but I would be happy just to make myself and others more aware of the special needs world.