World Down Syndrome Day 2018

A few years back, Eli asked to talk to his 4th grade class about World Down Syndrome Day. This year, Maddux followed suit. (She claims she did this last year, but none of us remember that, and surely we would!) Just after Christmas, Maddux started talking through a power point presentation she planned to put together to show her class. She was granted permission by her teacher, and went to work. In true Maddux fashion, it was 300% heart with just about 80% work: the night before she was to present, the power point was still being worked on. But that is to say nothing of the sentiment of it all. While Maddux wanted to do this 'big' thing in her class, what she has done in every class, and in the whole school, is introduce kids to Ruby in a way that is all things good. She always brags on her sister and introduces them to her friends and teachers. The whole school already knows Ruby, and it's largely in part to her amazing big sister.

The day before World Down Syndrome Day, Maddux got up in front of her class and gave the presentation she practiced at home. She said there were a few questions, but mostly the kids just listened and agreed to participate by wearing different socks (and red, for Ruby). The morning of, I went to Maddux's class to get a picture of her and her friends. It was so cool to see all of these kids participating in something they might not have known anything about before Maddux's presentation. We reminded her how cool it was that she impacted those kids in such a big way; their interactions with people with Down syndrome - or maybe just people who are different from them - will be forever changed.

The Mansion of My Mind

I came across a blog this week that spoke so eloquently what weighs so heavy on my heart some days. The author spoke about her daughter, her daughter's chromosomal syndrome, and how it feels sometimes to live in that world. The line that jumped at me is one I could have written:

"it's hard living in the zone of parenting other people hope to avoid."

Hard indeed. For one, it's hard because I hoped to avoid it. Yikes.

I love my daughter. Seriously LOVE Ruby to pieces. Not a day goes by that I don't grab her face and have to stop myself just short of eating her up. And I want her. I actively want her in our family. But who she is isn't who I thought I would 'want' when Lehr and I decided to try for a third child.

So I get it. I get the parents that hope to avoid this particular zone of parenting.

I was absolutely one of those people. I was very close to discontinuing our attempts to have a third child when I found out I was pregnant. And that was almost exclusively because my age made me think that the odds were too 'in my favor' for a baby with Down syndrome. And why I was afraid of having such a baby was because I had no experience. I had no personal connections. I had no real facts. I had no idea what Down syndrome was except for the random and very lacking information I had read in passing or been taught in a biology class once upon a time.

That is why I am so passionate about World Down Syndrome Day and the Buddy Walk and getting Ruby's shirts out there and plastering her face and her videos and her story all over Facebook. It is my hope that those around our family - and their children and their friends - gain some insight into how not scary Down syndrome is. Is my hope that they are not like I was before I had Ruby.

Recently Lehr told a stranger about Ruby and her first question was "How old was your wife when she had her?" When he answered "36", that was followed by a head nod and a "yup..that's the age" type response. Ouch. It's not even that I'm offended by her perhaps insensitive or ignorant reply, it's more that it pains me to remember that I would have thought the same thing: pity and a 'that figures' response.

Back to the blogger's statement about living in this zone. She followed that with "It's hard having a child other people actively don't want." How I feel about that is something I get stuck on from time to time. It's not hard to love Ruby, but because of the lack of inclusion in so many areas of our lives, it is sometimes hard to parent her. Not physically parenting her in my home, with my friends, surrounded by family. But it can be hard to parent her when we're at a park. Or at the hospital. Or in a store. Or anyplace that she decides to act like she's two years old. We all know what two looks like: random tantrums, messy eating, social awkwardness, lack of 'listening ears', flat out disobedience. But I know when Ruby acts two in these ways, the spotlight is on her more, and for many people - people like pre-Ruby me - her behavior is chalked up to her extra chromosome: 'that figures'.

And it can be exhausting.

Exhausting to try and get her to blend. Exhausting to try and disprove any stereotypes I anticipate her audience is believing. Exhausting to feel I have to defend her 'special need' to everyone we encounter. Exhausting to feel like I'm always on guard, ready to stop her from overstepping her boundaries. Exhausting to parent her under scrutiny filled with pity.

Good thing she's cute.

In all seriousness, this isn't something that gets me down every day...it's just where my brain goes when it has a moment to wander every once in a while. Mostly it's one of those things that I don't even realize I've been thinking about until someone else voices it and then I feel a weight lift as I realize what I've unintentionally been carrying. So today I'm dropping the weight...hoping to not pick it up without noticing again.

World Down Syndrome Day

World Down Syndrome Day was last Saturday, but the after effects are still being felt in our house. We've heard so many stories, seen so many pictures, witnessed so many videos.... I thought the Buddy Walk last year was amazing in the overwhelming support we saw. This topped that. Not because people supported Ruby (even though I realize she is at the center of it for our friends and family), but because people were bringing good awareness to Down syndrome in general.

We asked Team Ruby to celebrate the day of awareness (3.21) by wearing different colored, different patterned socks. The idea behind that is that you wear mismatched socks and someone calls you on it. Then you start a conversation about Down syndrome. However, when the kids and I did this last year and I 'quizzed' Eli on what he would say when people asked about his socks, he responded "I'm wearing different socks because what makes you different makes you beautiful." So we totally embrace that side of it as well.

For those Team Ruby members that have a Ruby is a Gem shirt, or a Buddy Walk shirt, we asked them to wear that as well...another conversation starter. And because 3.21 was on a Saturday this year, we asked ANOTHER favor: wear your stuff on Friday too because you're likely to see more people at school and work.

Team Ruby members started sending in pictures (I got over 20!!) of their shirts and/or mismatched socks before I even left boot camp Friday morning (speaking of which, Team Ruby shirts showed up at camp even though I never mentioned it to my campers). People from several different states took pictures of their socks, their shirts, their kids, themselves...it was awesome! And then we got emails throughout the weekend. Our friends shared the stories of how their conversations went with their kids about why Down syndrome needs awareness, stories of talks about what Down syndrome is (and isn't!), stories of amazing kid responses to WDSD. We got a few videos of friends' kids wearing their socks and telling the camera about it, we got a video of one friend (only 7 years old!) telling his class about Ruby, we got messages describing kids telling their classes about Down syndrome (some from kids/families who have never even met Ruby!).... It has been a very emotional week, to say the least :)
 
Finally, Eli did talk to his class in preparation for Friday (so cool!). That morning I took Ruby in to his class and we took a picture together. It was amazing to see all of those kids wearing red shirts and mismatched socks! When more experienced parents told me Ruby would change the world around her, I knew they were right, but I had no idea her reach would be so big.....

First 5K

For at least the last two years, Eli and I have been planning his first official 5K. We've signed up for two or three, only to have sports or travel get in the way, and he's trained up to three miles a few times without earning a shirt or a medal.

So when we found out that Gigi's Playhouse was sponsoring a 5K this spring, we jumped on it as a family activity. Lehr and Maddux planned to run and walk while pushing Ruby in the stroller, and Eli and I planned to run at a pace set by him. As expected, sports schedules came along and rained on that parade. Maddux's game would be too close to allow for her to participate, and Eli's game was going to be cutting it very close. Eli was very adamant about running anyway though, so Lehr took Maddux to her game while Eli, Ruby and I went to the race with the plan to meet at Maddux's game as soon as we finished the 5K.

Eli was SO proud to wear his green race shirt as soon as we arrived. We talked a little about strategy ahead of time, and we agreed that something around 33 minutes would be great. The main goal for Eli was just to not stop running. The organizers ran us through a quick warm-up and then the race started. Eli and Ruby and I moved through the crowd at a decent pace; I tried to slow him a little so that he didn't run out of steam too quickly. The first half was great, but in the second half we did hit a very steep hill. Had Eli not been there, I may have walked at the top because of the extra stroller weight. Eli kept going though, so I matched his stride and we even sprinted the last few tenths of a mile. Eli finished at 33:13...so very proud.

We grabbed a water and he told me, "No way could I do a 10K....that was a really long race!" He seemed fine, but on the 25 minute drive to Maddux's softball game, Eli fell asleep next to Ruby in the back seat.

World Down Syndrome Day Prep

As World Down Syndrome Day approached last year, we had just started having conversations with Eli and Maddux about what 'Down syndrome' means....I think it was that week, actually! Both kids wore mismatched socks and we touched lightly on how wearing socks causes conversations about what Down syndrome really is and isn't. Different socks, check. No real conversations, but we had pulled our whole family into this community.

This year is so different. We've had many more conversations since then about more specifics surrounding T21. Eli can even explain the whole chromosome situation to you. A few weeks ago we started talking about World Down Syndrome Day. We put out the 2015 Team Ruby shirt for people to buy and wear, and the kids started talking about their socks. Then Eli said he was going to get his whole class to wear mismatched socks. While this was cool to hear, I wasn't sure if Eli would really follow through. This wasn't anything we wanted to push on the kids, so we let Eli take the lead and he kept with it. We helped him figure out what to say to his class this week (though all we really did was listen because his plan for speaking was spot on), and we talked about the best time to remind kids (the day before).

This afternoon, Eli stood up in front of his class and told them that Saturday (3/21) was World Down Syndrome Day. He said to participate, our family and friends were planning to wear our Team Ruby shirts and mismatched socks. He reminded them that Ruby has Down syndrome and that means she has 3 sets of her 21st chromosome instead of the pair that the rest of us have. He also brought in a picture of Ruby, his Ruby shirt and a pair of mismatched socks to show them as an example of what he was planning to wear. Then he asked them to wear mismatched socks too because what makes you different makes you beautiful. AND he asked them to wear red because that is Ruby's color.

 Low and behold he got off of the bus and told me to pull up his class blog. His teacher always posts the homework on there, so I didn't think anything of it. We did, but as he scanned through it, he said, "It's not there...refresh it." I did and suddenly appeared an extra item of 'homework':

World Down Syndrome Day:   March 21st is World Down Syndrome Day (The 21st chromosome has 3 chromosomes instead of 2, therefore, 3/21  is the date.) Help us support this fabulous cause by wearing red and crazy socks tomorrow! Thank you Eli for sharing your story.

 
I was so proud! I emailed his teacher and thanked her and then asked if i could come in to take a picture of the class. Eli assures me that everyone is participating!