Thursday, March 26, 2015


Both kids have been studying a fire safety unit over the last few weeks. Eli and Maddux each have special fire safety workbooks and they are scheduled to take a trip to the local Fire Safety Village. (If you don't know what this is, seriously cool. We had nothing like this when we were kids! It's a series of buildings and streets designated to teaching fire safety (and bus safety, and street crossing safety, and and and) procedures.)

Eli's main assignment was to draw a floor plan of his house and complete a fire safety plan. Then, he had to put his family through a fire drill to practice that plan. We've talked as a family about this before, so Eli was pretty well-informed about what to do, but we'd never actually gone through a drill. He insisted that we all go to our rooms and wait for him to blow a whistle and then follow our procedures exactly. He even wanted us to put Ruby in her bed to practice getting her, but I vetoed that given her likelihood to be less than excited about being dumped into her crib a good hour before bed time.

Eli blew the whistle and we all followed our plan, leaving the house through our assigned exits and meeting at our safe place. Once we finished that, he wanted to practice what we'd do if the kids couldn't leave their rooms because there was a fire in the hall. While we didn't actually climb out of the windows, we did have the kids stay in their rooms and go to the window to wait for an adult on the outside to give the all-clear.

Once all of THAT was done, Eli then reminded us that we need to do it once/month to remember what to do. Love that boy.

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, 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.....

Wednesday, March 25, 2015

Batter Up!

Maddux is well into this season of softball, but we've only had one game so far. Between freezing rain and ice storms, so many practices and games have been rescheduled and cancelled that I'm doubtful she's really getting a taste for the sport.
Regardless of that, Mad Dog had a GREAT first game. Ruby and I got there just as the girls were warming up prior to the first pitch. In her first appearance, Maddux played pitcher, second base and right field. During her inning as pitcher, she fielded the ball every time it was hit, getting it to the first base (wo)man quickly.
Maddie hit three times, getting on first or second every time she smashed the ball. She LOVED the game and said hitting was her favorite part. 

Unfortunately, Eli's soccer game overlapped, so the boys weren't there to see her debut. Eli was quick to voice his disappointment in this, which was music to my ears.

Tuesday, March 24, 2015


They never stop, and I only manage to remember a small fraction of them.
  • We were at Chipolte for lunch over the weekend, and Maddux saw a tall teenage girl. When she passed, Maddux leaned over and whispered to me, "Mommy, I don't think she's even married but she's taller than you!"
  •  Same weekend, breakfast at the house: Maddux says, "When I grow up I want to babysit my brother's kids." Eli shakes his head no. Maddux nods furiously and says, "YES! Eli, you have to marry.... Remember the 10 Commandments: 'boys will get lonely'."

Monday, March 23, 2015

Sometimes It's Just Easier

Here comes the truth train again....choo choo!

*Disclaimer: I realize that all too often these days I open up the doors to my crazy mind and let everything come out. These truth moments are just that: truth moments for me at the time. It doesn't mean 'everything is awesome' and it doesn't mean it's all hard times. It's just a result of what I'm swimming in these days. I don't write these types of posts to be a downer, or in hopes of pity for Ruby. It's just my cathartic way of working through parenthood: for Ruby and the other two knuckleheads.

I am all for inclusion. So for it. The pros for Ruby, the pros for the other kids, the pros for the school, the pros for the church, the pros for the community. We are practicing it now and planning to practice it in school, church and any other area we can for as long as we can. But, if I'm really really honest, sometimes it is just easier to not participate in inclusion.
Ugh. This is tough. I recently blogged about the D word. That plays into it sometimes, because it can be hard to surround myself with a room full of kids the same age as Ruby who have developed significantly beyond her. It isn't always easy to have her delays be so obvious. But more than that, it often stresses me out these days to be in some inclusion situations where we don't know the other families. We have had nothing but awesome times with friends on play dates and at church where Ruby interacts with other typical kids her age. But the situations where we encounter single-serving friends, or semester-long friends, those are hard. 
The moms and dads smile earnestly when they see Ruby. And they look me in the eye and genuinely tell me, "She's just adorable" or "She's so loving". But that smile changes after a few minutes of play. That smile becomes nervous when she starts to verbally protest to being held or sitting down (as all 2-year-olds do). Their laughter becomes stiff and a little forced when it becomes unclear if she will hug or tackle their child (as all 2-year-olds do). They break eye contact with her when her tongue hangs down her chin, mouth open, as she studies their face for longer than they're used to.
And halfway through the time spent at the park or class I notice that my shoulders have been tensed up and I've been clenching my jaw. Not because I worry about her hugging someone too hard, or because her tantrums are bad (because she has yet to even throw a tantrum), or because she's being rude with her staring, but because I feel overprotective. Overprotective of Ruby and the perception of Ruby. I know that everything she does will be scrutinized more than it would be for any typical child in the room because of her visible extra chromosome. How do I know? Because I was those moms that smiled stiffly and laughed nervously and looked away. Heck, I'm still that mom around some kids with other types of challenges. I think I've gotten more comfortable around most kids in our greater community since Ruby's birth, but I'm still a work in progress too.
So sometimes it's just easier for me to be with other moms who get it in a way only we can. Sometimes it's just easier because I can relax a little more when Ruby doesn't stand out. Sometimes it's just easier to be with friends that know us because they are comfortable with who Ruby is. Sometimes (choo choo!) it's just easier because when I'm in our community or with friends, then I can let Ruby be Ruby instead of trying to make her something she's not meant to be.

Sunday, March 22, 2015

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 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.

Thursday, March 19, 2015

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!

Wednesday, March 04, 2015


Sometime in the last year, Lehr introduced the game of poker to the kids. A great tool for math stats in your head, and counting/adding chips quick, he thought it would be fun to have an ongoing game with the kids. Eli has had moments of really taking to it here and there, even starting to play via Facetime with his grandfather.
Recently the kids and Lehr started up again and this time Maddux is very into it also. It has provided much after dinner fun for everyone, even if there is no money at stake.