VBX

Yet another fun VBX in the books. As we are in the year of many transitions, this year's VBX added another 'new' experience for our family. While Lehr was still in charge of music, and I was mostly behind the camera, and Eli was playing drums all week, Maddux joined the volunteer ranks and Ruby attended as an official camper for the first time!

When we first talked to Maddux about where she might want to volunteer, she said she wanted to do the motions on stage, for sure. That was a no-brainer, as many of the youth do that in addition to their other roles. However, last summer Maddux was exposed to a song that she knew would be great for VBX. So we kept it in our pocket all year and when it came time for Lehr to pick songs, she campaigned hard for "Royals". It worked and Lehr chose it, but what was even better is Maddux and I worked together to come up with the motions for that song. She took a lot of pride in it, and was even able to help out the volunteer in charge of teaching the dances. So fun!

And it should come as no surprise that Maddux chose working with a group of kids as a 'group guide' as her other (main) job. Also not shocking was that she wanted to help in Ruby's group. This was perfect, as we were not sure how to ensure a successful camp for Ruby without one of us present.

But without us even mentioning that to Maddux, she stepped up. (In the end, Lehr ended up working with that group as well.) I loved seeing Maddux help the kids in her group - while she was there for Ruby, she gravitated towards two other little girls more often. She has such a beautiful gift!

Ruby had a great time, eating and playing with her friends. Maddux had a blast, dancing and getting to know new kids in the youth group and 'guiding' her kindergartners. And Eli loved playing drums and working with two of his 'big' friends as a water boy.

My Happy Place

Today was a good day. Like, a really good day. The big kids weren't even with me very much...what made it good was what they were doing while out of my house.

Maddux is in the summer of transitions. She's about to start middle school which means new opportunities with church and sports and youth group... so much at once! Regarding church, she gets to attend FUEL (the youth group for 6-12th graders), but she is also without a 'class' during the actual church service each week. When Eli is not playing in the band for the elementary kids' service, he sits with friends (or us, if we're lucky) in the big service. Maddux has already found a home, serving in the preschool area any time they will let her. Since we are always short on volunteers, they let her every week! She has such a heart for kids, especially the little ones, so she loves doing this. I asked her last week if she would ever come sit with me in the big service and she kind of wrinkled her nose and said, "Maybe one week, but only if we were here for both services so I could still work with the kids." Not at all a shock since anytime I try to find her at church, she is under a pile of kids on her lap, reading books and engaging them in songs.

Today my girl served with some littles (maybe 2-3 year olds?) alongside a family friend. I didn't know the friend was in there with Maddux until she ran up to me after the service. She could not stop raving about Maddux and how great she is with all of the kids, not getting frazzled when they are upset, but instead calmly meeting them where they are. She reminded me of all of the amazing ways God has blessed Maddux with the gift of serving others. "It was an honor to work with her today." There are so many times I see her with Ruby and think the same thing...

Maddux does not get this from me: our social IQ's could not be further from one another. I honestly feel it is an absolute God-given gift, the way she is able to connect with people and make them feel at ease. I saw it last week also when I drove her and a friend to camp each day. Maddux and her friend hadn't had many opportunities to hang out in many months, so I wasn't sure if the conversation would flow on the first day. But Maddux never missed a beat, sitting in the middle seat with her friend instead of the front (as she would prefer), asking her friend all kinds of great, specific and intentional questions about her summer, helping her to feel comfortable. I seriously drove the whole way with my jaw on the ground, in absolute awe at her social ease and intelligence.

On to the boy... It's no secret that music is something Eli loves. He's been playing drums since age two, and he's picked up the trumpet and guitar in the last two years. Even though he only started with the electric guitar just over a year ago, it's where he spends most all of his free time these days. This week he was listed as the lead guitar for the Sunday morning kids' services for the first time. He was SO excited. And when he went to rehearsal on Thursday night, Lehr said he was shocked at how well he had prepared himself and how well he played.

So this morning, Eli was at church by 7AM, rehearsing and then playing guitar in two services. Then he returned to the church about an hour later to set up and rehearse for the next week's camp. (At this camp, he'll be playing drums with another worship band.) In total, he was at church for about nine hours, worshiping with two different instruments and two different bands. His passion for those instruments right now is impressive. And in a house where music is king, it warms my soul to see him working so hard on it and holding his own so well.

School of Rock

Ever since Eli was a wee one, Lehr and I have seen advertising for a music camp in our area. The "School of Rock" offers lessons and camps, and appeared to cater to the less traditional music education (which we loved). Between the cost and wanting to make sure he was old enough to really get something out of it, this is the first year we signed up. As expected, Eli chose to sign up for the camp with his electric guitar, rather than drums. What's better is his best friend, Drew, decided to join him (on guitar also) at the last minute.

The boys had a good time through the week, learning some classic rock songs on their guitars. Eli dabbled a little in bass, mainly because they needed someone and he could adapt his skills quickly enough. The week culminated in a concert, showcasing maybe 5 or 6 songs, completely performed by the kids from the camp, including, "Another Brick in the Wall", "Satisfaction", and "Another One Bites the Dust".

Eli enjoyed himself, especially because Drew was there, but we were reminded (again!) how blessed Eli has been to have so much experience already playing with a band (of adults or kids) consistently for the last several years at church. He's able to prepare at home and walk into a band situation, ready to play and work together to make necessary adjustments. This camp is a great way to provide that learning experience for kids, it is just one that Eli has been fortunate enough to have had already.

Gigi's Gala 2018

If you know our family, you know that we love Gigi's Playhouse. Since Ruby was born we've visited the Atlanta location several times each month, if not weekly. We've met friends and therapists there that will always have a special place in our history - in Ruby's life, from John and his therapy dog, Owey, which Ruby saw often for a while before she started school, to Ruby's peer, Norah (and her mom and her siblings), who we still see at least once/month.

As a free facility, fundraising is necessary, and the biggest fundraiser of the year is the Gigi's Gala. It is an all-out, black-tie, fancy schmancy affair that is unlike anything I've ever been to before. I've helped with the photography side of it for two or three years, and last year Ruby got to attend the 'cocktail hour' with Lehr. She LOVED this last year, as she got to hang out with a volunteer and dance and play, with Daddy as close or far as he felt comfortable.

This year they upped the ante on us: I shot it, Ruby and Lehr attended, and they asked me to speak. While the attendees of the Gala have a connection (and some funds to share), they are not typically people I see at Gigi's, so I got the idea that having me speak was a way to share a 'real life' Gigi's family.

While it was a huge honor to be asked, I've never given a speech before, especially not to a more 'civilized' audience. (I give speeches to my kids every day, if I'm honest, but those are more of the rambling kind, if you know what I mean.) I wrote my speech, had someone proof it for 'flow', and then practiced talking through it endlessly in front of Maddux and in my car. For weeks I would dance around the words, trying to find the best phrasing and cadence.

The night of I was scared to death, and my last minute practices in the restroom were not going too well. But when I took the stage it became a bit of muscle memory and I was able to wander through my speech, ad libbing where I needed to and hitting the points I needed to. I only had to look at my notes once (the same spot that always made me pause when I was practicing)! It was an amazing experience, to be asked to move way outside of my comfort zone. I so enjoy connecting with families, new and 'old', and helping newly diagnosed moms when I can. But to speak so broadly and formally was scary, so I was incredibly humbled to be met by numerous attendees (in tuxes and fancy gowns, no less) after I got off stage. They wanted to thank me and shake my hand and compliment my speech and presence. It was surreal.

Lehr and Ruby left almost an hour before I took the stage; we both knew pushing Ruby to 'behave' until 9PM in that overstimulating environment would be pushing our luck. But I reminded him that his presence would have probably made me even more nervous. (A good friend pulled out her phone and caught the speech on video for Lehr, and of course I have my notes.)

Imagine you are invited to the biggest party of the year. For months you search for the perfect dress. You want to find the shoes that make just the right statement, and your jewelry has to be just right. To say you are excited is an understatement. But as you open the door to enter, all noise stops and everyone's eyes are on you. Your excitement changes to panic as you realize that not only are you late, but you are way overdressed.  Every table is at capacity, every seat is taken. And now people are staring - but trying not to stare - as you nervously move around the room, anxiously searching for an available chair. Finally, you see one. You rush over and sit down, breathing a sigh of relief as you hear the party start back up around you. And what's even better, when you look around the table, you find friendly faces offering you a drink and asking about your day.

When my daughter Ruby was born, the new world we found ourselves in was that party, and Gigi's Playhouse was that table.

We did not have a prenatal diagnosis, so when Ruby was born with Down syndrome we were thrown into something we had never prepared for. We had no connection to anything related to Down syndrome, but luckily for us, a close friend found Gigi's Playhouse through a Google search. I still remember the first time Ruby and I visited Gigi's. We attended Therapeutic Thursday, which is a program involving physical therapists and speech therapists and occupational therapists, all working with attendees and their children in whatever capacity needed. But the therapy part is not what I remember most about that morning; it was the instant connection I had with two other moms I met. We talked all morning, exchanging similar diagnosis stories and comparing notes. The next week, I couldn't wait to go back. But instead of those two moms, I met and connected with a few different moms, with different aged kids and different stories. And the following week, the pattern continued.

It's easy to see how I quickly became a Gigi's Playhouse addict. It gave me such an great opportunity to join up with other families, families who were walking the same walk as us and who just got it. Not to mention, every time I attended, there was a volunteer therapist there helping me. This was huge - HUGE - for our family, especially in the early days when we did not have an established community to go to with our questions and concerns.

We celebrated my daughter's fifth birthday yesterday. Five years of Ruby. Five years of Gigi's. In the last five years, Ruby has visited Gigi's pretty much every week of her life, even through an eight month season of leukemia. And why? Because she has therapists and tutors and volunteers...  and friends. She has more friends through Gigi's than either of her siblings ever had. And those older siblings have been to Gigi's Playhouse dozens of times to participate in programs with her. They know Gigi's kids by name, and they have seen the great worth of our Down syndrome community. And me? I have a tribe, A HUGE tribe, that wouldn't be nearly the size it is without Gigi's Playhouse as it's backbone. This community is so important to me, so vital to my daily success as Ruby's mom that I even got a matching tattoo with a bunch of them earlier this year.

My family is forever grateful to all of you for supporting the efforts at Gigi's Playhouse, for seeing the potential of our kids, and for giving us a seat at the table.

Shark In The Water

Another season of summer swim is upon us. Maddux and Eli have been doing this since they were 4 and 5 years old, and they are still goign strong. Each year, practices start, after school, a few weeks before school even finishes. Then practices continue, but in the morning hours. This year, with their ages being so 'old', their mornig practice doesn't start until 10:30AM...that is late!

A few meets in, and both are having success at having fun, with the occasional blue ribbon. Maddux claims her favorite stroke is back stroke, while I think Eli is favoring butterfly these days.

Ruby was not quite up to swim form for this season, but the big kids are excited for her to hopefully join next year.

Ruby is 5!

"Me Booth-day!"

This is what Ruby has been telling us for the last week. She knows her birthday is on "zoon seffen" (June seven), and she has been so excited for that day to arrive.

The kids made her pancakes for breakfast, and we hung out, playing at home most of the morning. Because of our summer nights being full of swim meets and VBX rehearsals and soccer tryouts, we had her 'non-party' just before dinner. Close to 50 friends came over to raise an ice cream cone to Ruby as we sang 'Happy Birthday'.

Ruby loved seeing and greeting her guests as they arrived, but one got an especially enthusiastic welcome: her pre-school teacher, Miss Jennifer. Ruby ran across the yard and tackled her with a hug, grabbing her hand and telling her to 'come. sit'. She also attempted to introduce her to several other attendees.

As we've been made aware so many times before, we have an amazing village around us because of Ruby. She is so loved!