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.