Big Chicken

One morning in June I received an email from a member of our T21 community indicating that a local photographer was looking for a local family of four, including a child with Down syndrome around Ruby's age, to do a photo shoot for a Chick-fil-A ad. Even though we didn't meet the family-size requirements, I submitted our family photo and information because I was so excited that there was interest in this type of ad. A few days later, the photographer contacted me and asked me a few questions about Ruby and before I knew it, we were being sent directions for wardrobe. This was happening!

The day of the shoot, I packed up so many clothing items to provide options for the shoot - I think I bought out all of Old Navy! When we showed up, there was a photographer, Chick-fil-A food preppers, a stylist or two, and assistants for all of them. They picked a dress for Ruby first and I took her to the bathroom to get changed. Almost immediately Maddux was in there with us too, putting on a dress they chose for her. 

The first 'scene' they shot was Ruby alone. She was sitting on a wooden chair, soon to be holding a bowl of Mac-n-Cheese. (At this point, CFA did not have Mac-n-cheese on the menu, so this was a very exciting surprise for my kids.) For a bit, Ruby was just to hold the bowl, they would rotate it in her hands, they would move her in the chair, they would change the lighting and lens and everything else, all the while shooting photos on rapid fire. Finally, they let her take a bite. And from that moment on, she was eating the entire time they shot. They had to keep the bowl full for the photos, so  with every bite she took, they replaced it.

When they were done with this scene (probably an hour of shooting), they gave Ruby a break. She sat on a couch with Lehr and read some books while they set up the next scene. This one was to be a picnic and they wanted to use Maddux and Eli also. To set the lighting and staging, they had the big kids sit there the whole time, so they could give Ruby a break and (hopefully) pull her back in when they were set. Maddux and Eli did great, mostly holding food and drinks, as another thousand photos were taken. (Later, they complained that their legs and feet hurt because of the angles they had to sit and hold for so long.)

Finally the picnic scene was ready to pull Ruby in: she'd had a great break, but I worried that she wouldn't be able to shift gears again. As she often does, that girl proved me wrong and sat right down with Eli and Maddux. She listened to the directions and held the things she was supposed to hold and ate the food she was supposed to eat. This portion was maybe only 30 minutes, and when they were done, the photographer told us we were finished. (The good news was that meant that all of the clothes we didn't use still had tags on them so I could return them!)

I promised the kids we could stop at Chick-fil-A for milkshakes when we left. Ruby fell asleep no less than five minutes after we got in the car though, so she didn't even receive her payment for modeling so well. That girl was spent...she used every bit of energy she had in that three hours!

And can we talk about that three hours? Ruby did SO well. When I think about what it required for her to sit still, in the position they asked her to, for an hour, and smile when they said smile, eat when they said eat, hold a bowl the way they wanted...the focus and attention and self-control she displayed was impressive. And then, to take a break (which she probably thought meant she was done for the day) and still come back and do all of that again...amazing to say the least.

 When we left the shoot, we didn't know when the photos would be used, but we knew it wouldn't be for a few months because the Mac-n-Cheese wouldn't be added to the menu until the fall. Outside of that, we had no information about when (or even if?) the photos would be used. So I watched social media starting in August, hoping to see Ruby's smile. At the end of the month, I reached out to the photographer, just to see if he'd heard anything or knew if they'd been used already and I'd missed it. He had no information, but said he had submitted the photos to Chick-fil-A (so we knew they were out there, at least).

And then, just a few days later, I woke up to an email from a friend who received a Chick-fil-A email including a photo of Ruby. And then a text from another friend with the same photos. And then Chick-fil-A's Facebook page changed their cover image to the three-kid photo. All day I kept receiving texts with photos from friends and reposts online from friends in other areas of the city and country that received emails or saw her on social media or on the CFA website. It was like Christmas! Every new photo of Ruby that popped up was cuter than the last. 

Y'all, this is SO exciting for our community. Just as has happened a few times in recent years, an ad for a major company has used someone 'different' for a campaign. And we couldn't be more excited about it because putting the face of a child with Down syndrome in the mix with all of the other typical kids out there helps us all remember that what makes us different makes us beautiful. So thankful for the companies that are recognizing this, whether they include models with Down syndrome, or in a wheelchair, or with a prosthetic....we love it all!

Best. Weekend. Ever.

Words can't even describe how full my heart is right now. Our weekend was full of stuff: events, work, sports, music, but we were together for all of it, which made it so so fun for our family. Two fo the highlights for us included our favorite band, The Revivalists. We've had tickets for four of us (minus Ruby) to see their concert on Saturday night forever. This last week, however, Maddux thought maybe it would be too late and she'd rather stay home with Ruby and an older friend. We obliged, but not without trying (unsuccessfully) to sway her up until the hour before.

Eli, Lehr and I had a GREAT time at the show, obviously. The front row tickets helped a lot; long gone are the days where we used to arrive 30-60 minutes before their show and hold the front row without much pushback. Their set was a great compilation of all of their albums, giving us many 'old school' gems. We got high fives from Rob (sax player) once he saw us, and near the end, David (lead singer) put the microphone in Eli's face and asked him his name and age, then told the audience to 'give it up for Eli!' Then, "give it up for his PARENTS!" (We won't let Eli live that down any time soon.)

As amazing as the show was, Sunday was even better. Ruby's time in the hospital connected us with Josh and Songs for Kids years ago. We love the organization and have been as involved as we can in their fundraising and supporting their vision for future endeavors. About a year ago they opened up a recording/playing studio to allow for serving the kids who are still very much living with medical 'stuff' but aren't staying at the hospital so much. So they can come to the studio and get music lessons, or play with the musician volunteers, or attend mini concerts put on by musical acts that come through town. We attended the grand opening, but have been unable to check out any concerts. Knowing that The Revivalists worked with Josh in New Orleans in the past though, we knew they'd try to be at the studio, and we wouldn't miss it for the world.

I can't adequately express how cool the experience was. We've seen our boys up close and personal over the years, so as amazing as that is, that was not what put this over the top. The kids and families in attendance were all in, jumping and dancing and singing the whole time. And these kids were not shy about talking to the band or playing instruments with them - that had to be refreshing for the guys! The afternoon started with some of the SFK kids performing one of The Revivalist's songs that they'd been rehearsing. Then the boys did three songs, pulling kids in on the last one. As soon as they were done, Josh had any/all SFK kids find a band member and work with them on whatever instrument they had. It was chaos, amazing, musical, joyful chaos. Ruby made her rounds from Zack, to Ed, finally to Andrew. I tried to grab a few videos and phone photos, but honestly I just held my spot at the back of the crowd trying to take it all in.

The best (for us) was yet to come. Most of the families had left and the drums were open, so we encouraged Eli to sit down at the set (we'd told the big ones to 'back off' the whole time till now because this experience was for the SFK kids, not them). As soon as Eli did, Andrew's ears perked up and he joined in for a few measures. My favorite part was when he said to Eli, "Oh, you can really play!"

Pure heart explosion to see our favorite band of all time mashed up with an organization so near and dear to our hearts - Best. Weekend. Ever.

volleyball

about a week before tryouts last year, you picked up a volleyball for the first time. while you showed great promise and learned a lot at the tryouts, you did not make the team. over the summer i may have signed you up for a few clinics without your approval. i contest that i did it out of love because i knew how much you wanted to make the team, even if you didn't want to put in work over your summer break.

but then you started hitting in the yard, and bringing your ball to the beach with us, and working on some skills even when you weren't at a clinic.

as luck would have it, you also had a few open gym days at your school, with one of the coaches the week before tryouts. all of this helped you feel much more comfortable on the court, so you earned a starting spot on the team. 

so far you've had ten days of school and eight days of practice. i love this. i love that you've so many hours on the court with your friends already, working on these skills together and trying to better yourselves. i love that your team has a coach that is really pulling you all in to support each other on and off of the court. i love that you've found something that is giving you plenty to work on, while still allowing you to see gains.

looking forward to your first game, Mad Dog.

friends

there is so much imaginative play these days. you are always cooking. ALWAYS. but a newer addition in the last few weeks is the gaggle of many imaginary friends around you at all times. 

this makes me at the same time happy and very very sad, and I don't have a place to put how i feel about that.

Back to School

All three returned to school in the last week, but they each went their separate ways for the first time.

Ruby returned to our elementary school, this time to a 1st grade class. She has a handful of repeat classmates, which will hopefully help her find some allies while she's at school. She was SO excited to return. Even though we'd discussed the schedule of events, when we went a few days before school started for our meet-n-greet, she wanted to stay in her classroom. In fact, when I said, "OK, Ruby, it's time to say good-bye.", she turned to me and gave me a hug, saying, "Bye, Mommy!" The first day was not a problem for her.

Maddux returned to her (private) middle school. As a seventh grader, the start of this year is pretty standard, being the middle grade and knowing what to expect. She was excited to return to the routine of seeing friends all day, definitely more excited than she was about the actual 'school' part of it. She had a few extra days at home without her siblings, which she filled with volleyball and friends.

The first week of Middle School always includes a few days at a camp nearby where the students go for a retreat. I love this tradition, and Maddux was very excited to return there with so many friends.

Eli started a new school this year: our local public high school. So he technically had two 'new' things to deal with. I will say, his overall demeanor the few days leading up to the first day was the most apprehensive I've ever seen from him regarding school, even Kindergarten. But I understand. Moving to middle and then high school is a big step, but even bigger when you've been at a small, family-feeling Christian school for a few years, feeling all warm and fuzzy in a bit of a bubble.

As we've discussed with Eli, the choice to move back to public for these last years is intentional, in part to give him a bigger, more realistic world view while he's still in our house and has a safe place to land each day. (As opposed to waiting until college or moving out after high school and having to face 'real world' without knowing you had people waiting for you at home who want to support you.)

But that doesn't make it easier, especially for mama bear.

The first day went off without a hitch for Eli though, complete with him making it to all of the right classes on time, AND having a friend in each of his classes (including lunch). And we've returned to riding the bus, which is working out well right now for him too. (Or at least it's working for the Uber-carpool driver!) Strangest thing for us so far? Wearing 'regular' clothes to school!!

Look At Me

I want people to look at Ruby. I want them to see her so much that they don't bat an eye when they see someone else who looks like her. Just like when you first painted your living room a new color: the sight of so much new shocked you to the point of doing a double take the next morning, but after a few days, it became part of the landscape because you were used to it. I take her every where I go, and people notice. I hope they notice promise and ability rather than despair or disability.

There was a big story in the news, or at least the special needs community news, last week about Shawn Johnson and her husband and their journey towards a possible Down syndrome diagnosis for their baby. This story has come under much fire in our community, mostly because many families feel that the Today show missed an opportunity because the tone of the story felt fear-based...like a bullet was dodged.

*Let me be clear in my take on the way it was reported: I feel like I've been very transparent in my own very fearful and sad reaction when we first got Ruby's diagnosis, and in several times since then. I don't fault this couple for being scared or even relieved when their tests came back without a T21 diagnosis because most people, including me, would likely have those reactions. Those feelings are very very very real, and reporting them is definitely important and relatable. 

In regards to 'our' issue with the story, I think most of 'us' feel it would have been great for the Today Show to end the segment with a look at some families living with Down syndrome (to see the positive impact the diagnosis has), and to also provide some resources for those receiving the diagnosis in utero. I think everyone can relate to the fear surrounding a diagnosis (as the story reported on), but not everyone knows or sees the other side of it. So many people are only exposed to Down syndrome (or other diagnoses) through media, so I realize that this puts a lot of responsibility on the entirety of reporting on stories surrounding them. But I think we have to provide the whole story. I can only imagine how hard it must have been for an expecting mom or dad, still reeling from a T21 diagnosis, to see this segment, ending with the summary that "whew....not us". It had to feel like a low blow.

So when you see Ruby or others out there, in the sea of 'normal' people, I hope you see ability and I hope you see value. Many times it would be much easier to stay at Gigi's or the pull out class at school, or even just our home bubble, but that would be depriving everyone who is not privy to this world.

Beach Blitz

As fun as our summer was, the busyness of the kids' camp and music and sports schedules kept us in town for all except the first week when we were out west. With us not making a beach trip in over a year, we struggled to fit some salt water and sand time in before school started back up. And while it wasn't ideal in timing or length, last weekend was the only possibility we found.

We left hours after VBX wrapped up, heading down to Mom-Mom's house. Because the trip was to be so short, we wasted no time in getting to the actual beach.

Before we even made it to her house the first night, we stopped at one of Lehr's favorite surf spots growing up.

The kids' happy place is definitely the beach.

Especially because it was just after 5PM when we arrived, they ran and boarded and splashed and overall bathed in the waves and sun and sand for over an hour.

We basically had the place to ourselves, which made it that much more magical.

Over the next two days we hit the beach each morning, breaking from the heat of the day for lunch and then getting another hour or so in before having dinner with Mom-Mom.

No trip to Melbourne would be complete without hitting two of our favorite spots.
Lehr and I grew up eating pizza on the beach at Bizzarro's. The kids are very familiar with the pizza slices that are too big for the flimsy paper plates they're served on.

And Del's Freeze was a staple for us in high school, and the cheap soft-serve is something the big kids don't mind waiting in line for (which is saying a lot because they are not the most patient about those things).

It was so nice to get a quick dose of sun, sand and salt in before the craziness of school starts next week!

 

VBX 2019

As crazy as it makes our schedule for weeks and even months beforehand, VBX is one of our most fun weeks every summer. We've participated since even before Maddux or Eli could 'officially' participate as an elementary camper, and every year finds us serving and playing in slightly different capacities.

For several years now, Eli, we've watched you participate in leading worship with other singers and musicians. I love how involved you get when Dad starts picking the songs for VBX, offering your opinions (whether he asks or not)...you are very invested in the programming for the week!

This year was the first year that you didn't play drums for VBX. The last few years have found you sharing the percussion section with one or more drummers, rotating each song or each night. But this year there was an opening on electric guitar, and you slid into that spot.

As always, you spent the rehearsals hanging out with some older kids that have a love for music like you.

And during camp, once you left the stage you were on 'water boy' duties.

Although I know that is a real job, sometimes it seems like a way for you to do some work at the beginning of each rotation, and then hang out with your friends (but your secret is safe with me).

Maddux, this was only your second year serving at VBX, but the way you assumed your responsibilities, you would have thought you were an old pro. Your first job request this year was being a youth group guide, and (of course) you requested to work with Ruby's 1st grade group.

While you really love working with your sister, there is one other 1st grade girl at our church that you've been working with in the nursery and preschool area for years that you really REALLY wanted in your group. You got your wish, and your heart for her was so apparent every time I saw you two together.

Your second 'job' was leading motions for the songs on stage.

You teamed up with a sweet girl you met last year at VBX that doesn't regularly attend youth group, but the two of you caught back up right away.

Finally, Ruby....your camp experience will be hard to top. Your group was a great one, with your sister helping guide your fun. And then you were chosen to act out parts a few times during the Bible teaching.

Then you got to come early one night when I was taking rehearsal photos, giving you a front row to the youth rehearsing on stage. Of course you joined Maddux and a few other 'big' friends that you've known your whole life. I think they like you as much as you like them.

But the biggest part for you was Walter. About a month before VBX, you made a connection with him at church and started seeking him out every Sunday. Then, on the first night, he asked me if he could pull you onto stage for something. Little did I know that before he asked you to pull a few prize tickets out of the bucket, he would dote on you.

The next morning when you woke up, you put your head on my lap as we talked about VBX the previous night. I asked you what your favorite part was, and without hesitation, you said, "Walter. Call me on stage. Say me beautiful. Two times." And you had the sweetest smile on your face. (And he did say that two times...that girl has a good memory!)

You had a great rest of the week, showing better focus and 'sitting' than last year in each of the rotations. And the last night? Walter named you 'Queen of VBX' on the stage.

songbird

you love to sing. you love to sing along. 

you love all music, but especially the songs in your current top 10. you know the words and sometimes your mouth allows the motor planning and articulation to line up enough for you to nail the lyrics at the same time as the voice coming out of the speaker. 

you live out loud. somedays are louder than others.

Summer Musings

It's summertime. That means craziness around the house as all three kids are home more, coming and going more, and any hope of a routine we have during the school year is out the window. I love it, even though my Type-A self can easily get distracted from the fun by the lack of order.

Last week a funny thing happened. Amidst all of the schedule-less-ness and no-plan-ever-for-a-real-dinner and house-is-a-mess, I found myself a bit relaxed. That is not my response to such chaos, but there I was, without my guard up and missing a clenching in my jaw. After checking a few lists in my head, I realized that I was relaxed because of the absence of school. For Ruby.

Weird, because I like routine and I love so much of what she's gained from being at school. But the school days (and the school weeks and the school months) definitely find me holding my breath. Sometimes I am waiting for the school to call me to pick her up because of her random and fleeting fever spikes. Sometimes I am waiting to see what her daily note home will indicate was the main struggle that day. Sometimes I am waiting for a possible call to discuss an incident that happened on the playground. Sometimes I am waiting in anticipation of an email or report indicating the level of delay we are currently facing.

Sometimes these things occurrences are continuous and sometimes I'll go a week without one. But I never know when the next one is coming and I never know what it will require of me in the moment. I might have to drop what I'm doing or leave where I am to get to the school right away, or maybe I'll *just* have to review my notes and Ruby's records and respond with an in depth email. One thing I always have to do though is reflect on what this new piece of medical or social or academic or developmental information means in terms of Ruby's school career.

There was a point early this spring that I realized I didn't leave the house outside of the grocery store during the week because I was so afraid of getting too far away from the school where I was destined to be summoned to.

So what do I do with that new brand of crazy I have found in my already full of crazy brain? Hopefully figure out a new chill pill to take for the fall. Hopefully find a better way to organize my day so that it's not preoccupied with the 'what ifs' or even 'whens'. Hopefully remember that I'm not ultimately in control and I need to trust the One that is.

we are gonna be friends

sometimes we get a glimpse into a really cool world. one where ruby has friends around her. friends who just love her. friends who don't need lehr or i to translate or facilitate.

we've not had a lot of this, as ruby is still young. don't get me wrong - we've had friends at church and school and in the neighborhood. friends who put in effort and who are awesome and loving and kind. 

but sometimes a shining friend makes you realize what you didn't know was missing. sometimes you find a friend who shines His light bright into our lives. a friend that doesn't really seem to be trying to be a friend - they just are.

they are getting as much out of the friendship as ruby is.