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.