Tuesday, January 27, 2015

How Far She Reaches

Yet another post I've started and stopped about a dozen times. The subject of Ruby and how she affects those around her is a concept that is played out before us weekly, sometimes daily. And it's in so many different ways that every time I think I have a handle on it, something else happens that makes me realize that my perspective was stopping me from seeing other angles that were equally, if not more, amazing.

Since her birth - since the night she was born - Ruby has been changing those around her. It started with us, Lehr and I. She showed us right away that while she carried an extra chromosome, she was still 'just' a baby. During that hospital stay, her diagnosis forced a couple we're very close to into this community. Then we returned home and allowed her to change others around us, one at a time: my mom, one of our pastors, more friends, more family.
Most of our friends and family had no prior connection to anyone like Ruby, so she became their ambassador through this diagnosis. And she did it in the most gentle way. Just as we didn't know about Ruby's diagnosis when we first saw her, almost every person we introduced Ruby to didn't know until we told them. Ruby was sure to put everyone she met under her spell, captivating them, not letting on that she had an extra chromosome until at least 20-30 minutes after they'd been able to hold her and connect with her.

A few weeks after she was born, we made the news more public by sharing her full birth story on the blog. And before I knew it, people from everywhere, friends of friends of friends were 'friending' me on Facebook, all for the purpose of following my photos and one-liners about Ruby. It became so much that I ended up creating a separate "Team Ruby" page just for her adoring fans. I still get messages and comments on her page daily from people I've never met, remarking how much they love learning about Ruby.
When we started planning for the Atlanta Buddy Walk, I hoped we would have a group of friends join us. And I prayed that we would raise a respectable amount of money for the local agencies and organizations. We were blown away - BLOWN AWAY - by the amount of money pouring in. Every week more and more donations were made in Ruby's name. Until the night before the walk, Ruby supporters raised the 5th most funds in all of Atlanta. And Team Ruby walkers? We topped out at 100. Unbelievable. On the morning of the walk, red Team Ruby shirts were seen all around our church, and our pastor even mentioned Team Ruby and the Buddy Walk in his sermon.
As we zoom in, Ruby has worked her way very deeply into the hearts and lives of several people. Some of these friends are experiencing Ruby's diagnosis for the first time through her and some are furthering their heart for the Down syndrome community. Sometimes this comes in the form of acquaintances and friends (both female and male!) trying to sneak in snuggles at church. Sometimes it's friends of mine, vying for a chance to Ruby-sit for an hour or so. Sometimes it manifests itself as kids at church lying on the floor and playing with her. And sometimes it's the way I cannot walk through Publix, or sit down in a restaurant, or go to the post office without someone following us and starting up a conversation with her because they can't break eye contact with her.
One of Ruby's strongest connections with someone she only sees weekly, at best, is with Russell. A boy who Lehr and I have had the pleasure of seeing grow up over the past 8-ish years. He has always been a rock star older kid (he's just a little older than Eli) to our family, but what we've seen when he's with Ruby has brought us more comfort than anything. Russell's mom recently shared with us that he has been drawn to kids with T21 through most of his life. And much like his connection with Ruby, his interactions with these other children have been magnetic. She wrote what I'm trying to say WAY better than I ever could:

Russell asks almost daily if there is any "news" about Ruby on her Facebook page. Funny pictures, cute videos. "Anything today, Mom?" I love that they have this forehead thing happening right now on the floor after church.  Magnets. Russell loves Ruby. I do believe that God goes before us, prepares people to have influence in our lives and allows us to be specifically loved by those who might not be obvious choices. I believe that God has prepared Russell to specifically love Ruby and kiddos just like her. What a delight she is to our lives. To his life, especially as he gets to love in a specific way that God crafted him. It's not an accident that we are friends. Not an accident that God made my boy the way He did and your girl the way He did and they dig each other. Ruby has a huge fan club.  HUGE. But I truly believe she will have a life long friend and advocate in Russell. Thanks for letting him love on her, manhandle her, carry her around when unnecessary, get all up in her face.... I think God made him that way.

Sunday, January 25, 2015

Ski Trip

Day 2...can't believe the kids woke up! Skiing almost 12 hours yesterday should have found them sleeping until noon, but they were awake by 8, ready for more. Lehr took Eli and Maddux up and down the mountain all morning again. We had to drive home today, but that didn't stop them from skiing from 9 until 1. Maddux stopped around noon, the fatigue from Saturday kicking in, but the boys went until the last minute. Can't put into words how proud I am of those kids...they both had a great weekend because they just focused on the fun and the excitement of a new experience.

Saturday, January 24, 2015

Ski Bunnies

For Christmas, Lehr and I gave the older kids a weekend ski trip. We chose a nearby 'resort': Cataloochee, in North Carolina. The kids were SO excited.

We scored some amazing ski gear on Craigslist and were able to outfit both of them with anything they could want or need (including helmets!). The gear was from a family with two girls, so the stuff had a slight feminine feel, but nothing over the top. The jacket Eli ended up in had some bright colors in it; he looked like a snowboarder. And his helmet was the lightest of pink (almost white), but he didn't mind. He actually said, "I don't care; I just want to ski."
We drove up after work on Thursday and planned to ski Friday and Saturday. Unfortunately, it poured all day Friday, which would not have made for a successful first day. We ended up just hanging around the cabin all day, watching movies, playing games, and dipping in the hot tub a few times.
Saturday was the opposite: a tiny bit of snow to start the day, but then bright blue skies and 36degrees with NO wind. We put the kids in a half day of ski school, just to get them acclimated. Even though we both got lift tickets for the morning, we ended up just watching them do their ski school thing all morning.
I was impressed with how well they both did!
When Maddux and Eli finished with 'school' at lunchtime, they asked to go down their school bunny slope a few more times (on their own) to make sure before going up top. That's all it took and then Lehr took them up (one at a time the first time) the chair lift to the top. I couldn't believe how quickly they came down...only a few falls each! Ruby was done at that point, so I took her back to the cabin for lunch and a nap while Lehr stayed and skied with the kids. They had a blast and even managed to get on and off of the chair lift without any injuries.
At 5PM, Ruby and I picked the three up from the mountain and brought them home for a quick dinner. They were back on the slopes between 6:30 and 7 and stayed until 9:30. That's a looong time! Maddux and Eli seriously had a blast. Lehr said they were both totally into it and enjoyed every fall, every bobble, everything.

Sunday, January 11, 2015

(Don't) Give That Girl A Hand

Because she doesn't need it!

Ruby had PT on Tuesday morning this week. Our therapist always gives us a handful of 'exercises' to work on for the next week, and we usually rotate through them in the course of our day. This week, however, I kinda stuck on one in particular: helping Ruby to stand without assistance or pulling up. (Or rather, helping Ruby to realize she doesn't NEED assistance to stand.)
Fast forward to Thursday after dinner (just over 48 hours after we started working on it!), Lehr and I were standing in the kitchen having a conversation. Ruby is crawling around and playing at our feet. Suddenly I see her out of the corner of my eye, in the middle of the floor, stand up from the ground and take 3 or 4 steps towards me! She was all smiles and giggle, very proud of herself.
I got her to repeat the stand a few more times before bed, and then our Friday was spent repeating again and again. I got all cheesy and used the prompt, "How big is Ruby??!?" to get her to stand and walk towards me. (Hey, it works!) Now she does it non-stop, which means she is taking more steps than ever.