Halloween

Not too much to report: it was cold - COLD - and kinda wet, but we all participated and were rewarded with candy.

Lehr started showing Ruby little 3-5 minute clips of old Popeye cartoons several months ago. So when we talked about her costume this year, it was a no-brainer. And because I love the group costume, that meant Lehr and I were in too. It was the EASIEST of all the group costumes so far and definitely the cheapest. Ruby's sleeves and 'cape' were sewn on by me, so that shirt won't survive a machine wash, but it did the job.

Maddux had four friends come over to spent the evening with us. There was much back and forth on what they would actually be, but in the final 60 minuets before go-time, it was "Zombie Golfers" courtesy of some white and black eye shadow I found to use as stage make-up for them. They froze, but they had a good time.

Finally, Eli was a hot dog. This boy wants to dress up still, and I love love love that. He told us at least a month before Halloween that he would likely buy a one-piece hot dog costume for this year, and he assured us that it will work for the next several years. He wore it to school (twice!), and the night of, he hung out at a friend's house with several other boys and they even hit the houses for a few handfuls of candy.

wonder

this girl. 

every day she finds something new. even in 'old' things. 

and she reminds me of how to look at life. 

how to open my eyes and look around in awe of what is right in front of me. she reminds me to have wonder.

Ruby's Cheerleader

Ruby has been doing a soccer program on Friday nights for the last month or so. While she enjoys playing soccer in general, her main love of these Friday night sessions has been spending time with a new friend. Blair is a 5th grader who volunteers at the soccer nights, and she connected with Ruby the first time she met her. Since then, when they are both at soccer, they are inseparable. 

Blair is also a junior cheerleader and has taught Ruby some of her cheers. That quickly moved into Blair's mom arranging for Ruby to participate with Blair's cheer squad at the homecoming game; she even lent us an official uniform!

A little backstory on Blair: her mom works in Special Education, which has obviously had an effect on Blair. She connects with people, and has an amazing heart for and patience with everyone. It has been really neat to watch her with Ruby (and without!) over the last month!

Today was the big day: Ruby was beyond excited when we arrived; she could not take her eyes off of Blair (and it was mutual!). Once the girls were introduced, Blair pulled Ruby on the field to get the game started and then they cheered next to each other on the side lines. 

Blair was so amazing, never taking her eyes off Ruby and trying to explain all of the cheers as they came up. (There were a LOT of cheers!) 

She high-fived and encouraged Ruby at every turn, and never left her sight or let her feel alone. She even carried her back after they all ran down the field for an important play.

Just before half-time, Ruby told Blair she was tired and came to sit with me for the last 1-2 minutes of the half. I'm very impressed she lasted that long given all that she was taking in while she was participating.

We are so grateful for Blair and her mom, and everyone who let Ruby participate. These opportunities are ones that seriously just land in our lap sometimes and I have to believe they are intentionally given to us so that we can own our influence (Ruby's influence!). Maybe now one of the girls on the squad, or someone in the stands that saw Ruby will interact differently when they meet someone who looks a little like her, or maybe they'll even feel comfortable enough to say 'hi'. The world needs more Blairs, but I know that she doesn't exist without first knowing some Rubys.

homework

one would think with all of the extra therapies and work and intentional 'play' that we you do, that the last  thing you would choose with your free time is homework.

but even in an afternoon full of play, you'll find a pocket of time between making food in your kitchen and packing for yet another sleepover to sit down and write or draw. always.

confidence

in some areas you've always had it. in others, you take your risks quietly. last week i watched you slowly work to standing on the stand-up-paddle board when you thought no one was looking. when you straightened your legs, you lifted your fists and quietly said, 'yes!'. then last night you shared the skateboard with your dad for ten minutes before sneaking in a few tries yourself. you weren't quite ready to stand without assistance, but you kept thinking about it. 

keep on, big girl. you've got this.

you

there is rarely a quiet moment when you are around. you are always talking, always asking, always connecting.

you have many bruises. likely because you are always jumping, always dancing, always moving. 

you are so many things to our family. you are light. you are music. you are joy. 

Buddy Walk

This event is one of our family's favorite annual celebrations. We gather with oodles of other Atlanta area families connected with Down syndrome in some way and just enjoy our community. We have always invited some of our 'typical' community to join us as well; two years in a row we had over 100 people representing Team Ruby! The last few years we have done less 'promoting', opting for a smaller gathering that day, in an effort to be able to hang out with the T21 family as well. There has still been much Team Ruby representation though, because you can't deter the love these people have for our girl!

That was so obvious in our team this year: over 1/3 of our Team Ruby participants were part of her teaching team at school. Amazing! These women spent the bulk of their Saturday with us, supporting Ruby because of two things: they are AWESOME and they love Ruby!

The weather was perfect, the setting was green and grassy and ideal for just hanging out, and everything except for our tent blowing away (twice) was perfect. Ruby thoroughly exhausted herself climbing up and down and through the bouncy houses and inflatable slides as much as possible leading up to the 'walk' at the halfway point.

She then obliged us and walked (or rode on shoulders) for the short processional. Her receiving her medal was a highlight for me!

And then she and her best 5th grade friend tackled all of the inflatables again (and again and again).

We shut the place down, finally packing up our tent after most of the official event clean up was complete. We just didn't want it to end! So much love for such a great reminder of the reach of Ruby.

light

our visit to the beach was brief, but it gave us exactly what we desperately needed during this harried time in our family. with each of you at different schools, and all on the fringes of having the demands of the next developmental stage heavily on your shoulders, 72 hours without that weight allowed for these moments. these moments to be kids, to be carefree, to be light.

Beach

A panhandle beach visit in the fall has been our go-to for as long as I can remember. We love the 'cooling' temperatures while the water is still warm, and the crowds are typically less than the summer or spring break. Our schedule was a little up in the air, so the booking was last minute, but we did get three days in the sun and sand!

Ruby could not get enough of the sand. She loved digging and 'making spaghetti'...many many sandcastles were created. She did like the waves too; Maddux took her out on a board several times each day.

Eli and Maddux alternated between a stand-up paddle board, our beater board (pseudo surf board) and the boogie board. Maddux also built many sand castles with Ruby and I. At one point we had a whole city. (To Maddux's delight, it was still there the next day!)

Eli also sprinkled in some skin boarding; that's always been a favorite beach activity of his.

We ate fish sandwiches and shrimp and snow cones and ice cream..food is never far away when we are at the beach!

The sun comes up pretty early, so we rose early as well so that we could enjoy the beach before the heat of the day. One of the mornings found us a little slower to start, which was perfect for me to play with taking some 'moody light' photos of Ruby.

Eli slept through the whole thing, resulting in a "wake up!" tickle fight for all four of my kids at some point.

We joined friends at a pool one afternoon, and then on the last night we ran into friends from 'home' and ate with them. Eli also had friends at a nearby beach at the same time, so he rode his bike to hang out with them one afternoon.

The last day found all three kids out on the stand-up paddle. We located a sand bar not too far out that allowed for some great fun.

The five of us stayed out there for a long time, enjoying solitude of the stretch of beach we camped at.

We went home for a late lunch, but returned to the ocean just before sunset to enjoy a last, less-hot play-session. Of course I took all of the photos of the kids.

Of course Maddux took the best care of Ruby the entire time, even when we didn't ask her to. Piggy back rides and entertainment were her specialty.

There was the usual arguing and maybe even some yelling, but all in all it was a great trip. Even with the friends sprinkled in here and there, we had a lot of 'together' family time, which is hard to come by when we are at home.

Team Captain

Today was another amazing opportunity day. Usually opportunities for Ruby means opportunities for our family too. That was definitely the case today!

When Ruby was living in the hospital, she and I would make a trip down to the garden area every morning (and usually every afternoon too!). We were such regular visitors that a woman (Amy) who worked in one of the ground level offices overlooking the area came out to introduce herself one morning about a month in because she'd seen us out there every day. We've kept in loose online contact over the years, even when Amy started working for the stadium instead of the hospital.

As September is Childhood Cancer Awareness month, there are 'gold' events at sports arenas all over the place right now. Our friend, Amy, contacted us a few weeks ago about attending a soccer game where they planned to gather families from all over Atlanta that have been affected by childhood cancer to form a gold ribbon on the field before kickoff. Unfortunately we couldn't attend. But a few days after I turned the offer down, Amy reached out to me again to ask if Ruby would be interested in being honorary Team Captain for Atlanta United for a game the following week. WOW!! This meant that all five of us could attend the game and Ruby and a parent would take the field for the national anthem.

This resulted in Ruby and I hanging out on the sidelines at Mercedes Benz stadium even before Atlanta United came out to warm up. Then, when they warmed up, the woman escorting us was made aware of a few extra field passes, and she asked if I thought the rest of our family would want to come down to the field too. Eli couldn't get down to us fast enough!

So we all watched the team warm up, and a few players came over to say hi (Eli's mind was blown!). Then, just before the team was about to be announced, Ruby went to the locker room entrance with our escort so that they could lead the team through the tunnel and onto the field. Ruby did SO great, grabbing the ball at the right time and standing so attentively on the field. She did not walk out like we planned (the escort carried her), but everything else was flawless. 

As soon as she exited the field, we were ushered out of the field area and back into general population. We found our seats and enjoyed the game. Both teams scored pretty quickly, but it was still a tie going into the 90th minute of the game. When Atlanta United scored the winning goal, the place went bonkers, including Ruby!

growth

when I came back from my weekend away, you greeted me the most enthusiastically of everyone, not to my surprise. you missed me, and boy did i miss you (and your siblings, of course). but your joy in seeing me wasn't the best thing that morning. while I was gone you seemed to grow. not physically, but in your 'you' ness.

between school and therapy and developmental assessments, progress is often discussed. are you progressing on your IEP goals, are you progressing with your fine motor skills, is your speech progressing... yes to all of those, most of the time - you are progressing. what I witnessed the whole day after i returned was different. it was not simply progress.

the definition of progress is a movement toward a goal or stage, where growth is defined as development from simple to more complex, and is described as change in size.

what i've seen since returning is your speech growth: you're giving me so many spontaneous complete sentences, formed solely by your thoughts. you're showing me executive functioning growth with your completion of multi-stepped tasks that were more complex than usual. your focus and self-control is mature in a way i've not often seen for such long stretches of time. your thought process in what you choose to do and how you choose to execute it is deeper in ways that i can't quite put my finger on, let alone put into words.

what i'm seeing right now, ruby, is growth, and it is amazing to watch.

More Than Lucky

When I got this tattoo, I did it to remind myself of the community that I have the privilege of belonging to because of Ruby. There were many moms that I had connected with that help me find stability in a sometimes rocky journey. They offer guidance, companionship, and counsel whenever I need it, and I wanted to honor that 'tribe' by inking The Lucky Few arrows on my arm. After this last weekend, that tattoo has become deeper in meaning.

For the last few days I had the pleasure of escaping town and attending a Down syndrome conference with over a dozen of these women. Some of these women I’ve known in person for years, some of them I’ve only chatted with on the phone or in text, most of them I see once a year at best. But none of that mattered as we came together in our version of a sorority house for the most humble,  connected, supportive experience that I’ve ever had with a group of women (who also happen to be very diverse in their walks of life, linked pretty much exclusively by the fact that we all have a child with Down syndrome).

For three days we talked and laughed, and got real with each other and got silly with each other, and talked about Down syndrome and talked about anything BUT Down syndrome, and swapped recipes and swapped hard life stories, all the while moving from small groups to big groups to one-on-one conversations to quiet reading times by the pool to a loud boisterous table talk. There was no expectation of how you were to spend your time and there was no judgment. We could go to bed early or stay up later than any of us have likely stayed up since we have become parents. "You do you."

While we were at an amazing conference, most of us agree that the house, the time spent with just us was the best part of the weekend. However, the conference had a standout moment for all of us when a 'mom panel' answered a few questions from the perspective of having having teen and adult children. The wisdom and experience in the answers these women gave was palpable. We were all left wanting more, and I kept thinking about how they had come to be so wise and full of perspective. Fast forward to a heavy conversation a few of us had just before bed the last night, and I was in awe once again, but this time by the moms I was sharing the late night hours with. It struck me that we all have some of that wisdom and perspective now, especially when we are giving counsel to someone else. (#mindblown)

Enough rambling.... Even all of the many words I've typed cannot sufficiently describe the freedom and restoration that occurred in less than 72 hours, but I know that as bonding as our experience has been walking through our lives touch by a diagnosis, this weekend cemented the deal. These women challenge me, they encourage me, the lift me up, they sit down with me... So whether we wear the arrows on our skin or around our neck or on our heart, we are all so amazingly woven together that to call these women my 'tribe' seems like an understatement.