Dear Future Mom

So lately I have been posting all this great stuff on my mom's Facebook wall but completely forgetting to blog about it! so I will catch up over the next few days with the stuff I've posted to her over the last month.

This video is absolutely brilliant and makes me tear up every time I watch it. Everyone should see it. It also makes me wonder about the situation of individuals with Down Syndrome in other countries. Are they more or less socially accepted? How are they supported in schools and by the government? Do the skills of individuals with Down Syndrome change from country to country depending on how much they are allowed to grow?

Time To Sleep

I was sitting next to Jillian eating my dinner when she glanced up at the clock and said, "Oh my gosh it's 7 o'clock! Time to get to bed!" and put her head face down on the table to "sleep".

 I guess that's one way to do it.

Days of the Week

Yesterday I learned my sister has a solid grasp of time in relation to weekdays.

My car battery was dead, so I asked my dad to come jump it for me. Since I had to leave my car on for a while I decided I might as well drive home and eat.

I arrived at the same time as my dad, so when my sister opened the door expecting to see just my dad, she flashed a look of genuine surprise and delight before putting on her exaggerated "surprise face".

After I took my coat off she stood at my side and starred up at me with a wide smile. "Whatcha doing Jill?" I asked. "Nothing" she beamed. Now, at this point I knew I shouldn't tell her my plan to have a special day with her because she doesn't have a perfect concept of time and will only talk nonstop about it until it happens, but I couldn't resit. I was just too excited. "I think over break, you and I should have a Minecraft day! We can build a big pillow bed and get a special snack at Hyvee in the morning!" I said. She sputtered a triumphant "YES" before a perplexed look halted onto her face. "Oh but...my wallet" she said sadly, implying she didn't have any money. I joked, "Oh don't worry we can use mom and dad's credit card" She instantly smiled again and started making hilarious gestures and phrases about spending money that she must have heard from movies. To try and avoid her asking about it everyday, I said that we would do it on Saturday. To my utter surprise she glanced towards the calendar and said smoothly, "Oh Thursday, Friday, Saturday! That's three days away"!

Wow. Well I guess I'll see you Saturday then Jill!

Jillian's Wisdom

After an evening hanging out with my wonderful sister I have learned two very important things:

- I must have asked Jillian at least 20 pointless questions about her well-being in the course of the night ("Did you want to sit closer?" "Are you tired?") and to each question she simply replied "No worry". You know what Jillian? You have it exactly right. I worry and over-complicate things way too much.

- Whenever I go out with Jillian I am bolder, nicer and happier. When she suddenly threw her coat down in the lobby and burst into dance, at first I was compelled to tell her to stop because I thought she might embarrass herself. But I stopped myself. Jillian clearly didn't care. We weren't in anyone's way. Again, Jillian has it exactly right. Social pressure? What's that? Wouldn't it be great if we all lived freely enough to just burst into dance when we felt like it?

As you are often prone to say of yourself Jillian, you're awesome.

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.