Catch Me If You Can

Maddux returned to cross country this fall, after opting for volleyball last year instead. When she started practices, she had to work back up to running the whole 2-3 miles at practice, but quickly her stamina returned. And her speed was always there. 

That girl was born with amazing form and efficiency with her running, which is another reason I was so glad to see her revisit this sport.

The season was without issue: Maddux participated in at least half a dozen meets, finishing first for her team in all but one of them, and finishing in the top 10 a few times. She would beat her previous time, only to beat it again the following week, again and again. 

It was such a joy to watch Maddux run, and to be challenged. She appeared to glide through each race without effort, but in talking to her afterwards, she was developing mental toughness to stay ahead certain competitors and finish strong. I hope next fall finds her on the course again.

Where's The Light?

I've not been blogging much at all during this time, which I've come to realize is not good because it's usually how I process the things that are rattling around in my head and in my heart. But having all of the people around me at all of the time makes for no 'free time' to write, even during this unprecedented season of open calendars. And it's not just Ruby occupying my head, heart and physical space all day...the big kids are too. They are obviously capable of entertaining themselves at this age, but that's a skill they developed and practiced during 'normal' life.

And we are currently far from that normal.

Because at this stage of the game, finding something to look forward to, something to get excited about is getting harder with every additional piece of news that resuming life (almost exclusively surrounding kids and schools) is being held off even longer. And the realization that I'm struggling with this adds more 'stress' to my heart because I probably shouldn't be feeling this way. Our family is SO blessed to not have the added burden of unemployment during this time, and I know with our privilege of health and wealth I have no right to complain. But many days I wake up numb from the thought of figuring it out for yet another Blursday. If I didn't have to get up and entertain, teach, therapy, exercise Ruby all day, I could see how I might opt to throw the covers over my head at sunrise and stay in bed.

In the beginning it was total lockdown for our family. If you can remember back to the very beginning of this in early March, there were even more unknowns about this virus, and with Ruby's history of a compromised immune system, we didn't want to take any chances. So absolutely no 'playdates', no trips to the park (they were shut down anyway), no anything outside of our yard, unless we were on a family walk in the neighborhood. We got the memo that this was serious and we followed every recommendation for at least six weeks, probably because Ruby's bout with cancer taught us how quickly your health can be taken from you. So we stayed home, I was the sole grocery shopper once every 7-10 days, in full mask and gloves (remember those days?)...I even sanitized the groceries before anyone else was allowed to touch them to put them away. And the kids rallied so well because we all believed that if we powered through it, there would be a light at the end of the tunnel. One that would allow not total 'freedom', but something resembling living a childhood worthy of nostalgia. Plus, school at home was a new thing so we were rocking and rolling, somewhat enjoying the novelty of it.

But those days blended into 'summer' without camps or trips or swim team or most of what makes up our summer memories. Days got longer, and often not because they were filled with fun. But we again pushed through because there was a light at the end of the tunnel. We felt like we were finally close to the end of that tunnel this last week. It was a month until schools were planning to open, talk of classes and football games and back-to-school 'things' were happening all around us. Even though these discussions surrounded the logistics of how the events would be different, it gave us all something to anticipate. Something to get excited about. Then we were hit with the announcement of virtual school only.

*I feel like I should give a head's up that the rest of this post is filled with what is in my head, based on MY family's reality. Please know that I am not attempting to be insensitive or force my belief on you. This is me airing out what is weighing heavy on my heart.  I love and support our teachers and school staff. I don't want to put them in harm's way, and they too should have a choice. I am not suggesting the government or schools take away anyone else's choice in this matter, nor am I shaming those that believe or (would) choose differently than my family. In no way am I trying to minimize the seriousness of a global pandemic. This is me trying to work through how to live in the current environment.

Ruby and I were in a marathon doctor appointment the morning of the announcement, but my phone started beeping with texts out of the blue, demanding my attention. In bits and pieces I read news from friends when the doctor stepped out of the room. My heart sunk with every word. No longer did we have the option of virtual school or in-person school: our county was going 100% online. The fall school moments we have used as a carrot to help us through this time disappeared with that announcement.

Our family had opted for in-person school for this fall for all three kids (one in Elementary, one in Middle and one in High). It has always been our choice for all of our kids to attend school rather than homeschool because (for us) the benefits of being around and learning from other kids outweigh what we perceive the 'cons' to be. Even and especially for Ruby. To keep her in school, that means we spend a lot of time attending IEP meetings and volunteering at the school and observing her instruction and researching options and rights. It comes with a cost to us, but we know the benefits of her being around other kids every day far outweigh any other option available to us.

Enter COVID-19. Scary, unknown, worthy of a pause. COVID-19 has risks that are very real. But now we are over four months into a type of isolation that appears to have no end in sight. And we are already seeing the realization of some of the risks associated with that. Staying home from school (at least for kids who rely and depend on that) is far from risk-free. Lonliness, depression, regression (in social skills, development and academics), feelings of hopelessness, anxiety...these are just some of the risks for kids in this current state. (It's important to remember that the effects of those risks can be fatal!)

But kids are resilient, right? I agree that 'small' setbacks can be overcome once normalcy returns. I'm not convinced that it's without consequence though. This quarantine time has given most people gifts they didn't even ask for: more family dinners, time to slow down the busyness of life, opportunities to explore new hobbies. (Our family has definitely been intentionally looking for these gifts and keeping the positive outlook during everything.) However, I'm seeing regression in many areas with Ruby...areas related to social skills and speech articulation to name a few. I can't recreate a playground or group activity environment at home for her to work on social cues and negotiation. And even as loud and talkative as our house is, it's not enough to make up for her not being exposed to a classroom full of (typical) peers talking throughout the day, 5 days a week. No amount of family game time can make up for that, as beneficial as it is. And the big kids are showing signs of wear and tear as well.

So, rock and a hard place, right? Many people claim that we can't possibly return to business as usual when this virus is still on the loose. My question is why not? Death and injury by automobile accidents is a significant risk, but we still get in our cars every day. We even put our kids on school buses (without seatbelts, no less!). Water-related accidents are worth noting as well, which is why life jackets and lifeguards are used. That's risky, but the benefits outweigh the risk. Smoking and drinking affect your health, possibly resulting in permanent lung or liver damage (including fatality), yet alcohol and tobacco products are still sold and used in most places. Those that drink and smoke believe the reward to outweigh the risk.

Why do so many people take these risks every day? Why do we still drive cars and go swimming in the ocean and indulge in alcohol or cigarettes? Because we've decided that the benefits outweigh the risks. That is where many of us are right now...in a place where we recognize the risk(s) of COVID-19, but the benefits of resuming at least one of the biggest childhood activities our kids have known outweigh the risk of suffering through what would likely be flu-level sickness. (*Please know my heart: in no way am I intending to minimize the severity of this illness for those who have been hit hard. That is not the majority though, and for the sake of this conversation, I think that counts for something. Also, I am not suggesting a mandate to return all students and teachers to school - I support the model where there are both options available because returning to school is not a healthy choice for every family.)

Many arguments I've read in support of closing schools cite the reason as 'protecting students and school staff'. At this point, I disagree that schools staying closed protects the majority. I don't think our kids and teachers (and school staff) are finding full protection at this time. I think they are being exposed to feelings of sadness, loneliness and worthlessness because the joy they derived from the interactions at school have been removed for so long. And those feelings are not without serious risks, risks that have longer lasting effects, some of which we won't be able to determine until later. Not unlike the risks of COVID-19.

And I could (and might) write a whole post about how continuing online school is not a viable option for Ruby and many friends like her. Special Education is getting left behind in so many ways with this decision, and that stinks. I don't have all of the answers with regards to how to remedy that, but it is the reality of the situation that the gap between Ruby and her typical peers already exists and this model of education just widens it further with each passing day.

Y'all, it's emotional. We are all tied up in the emotional battle of what we think is the 'right' thing. I don't fault anyone who wants to continue to school from home. And I don't think that my strong desire for my kids to return to school means that I don't respect the risk of death. Most everyone I know has experienced death in their family, likely multiple times even in the last year. Personally, each time I experience a death in my circle, it reminds me that I need to take every opportunity to live. At this stage of the game, I want my kids to be able to live by way of experiencing a part of their life that can't be paused indefinitely.

Kitchen Time

Baking.

Cooking.

Preparing.

All of the food prep possible is happening in our house these days.

I'm doing even more than I usually do (I find comfort in preparing and having a few 'staples' around the house most weeks). And Maddux hops in and out of baking interest.

I love it when she does, especially because Ruby is usually more likely to join her in the kitchen (she gets tired of 'mixing' with Mommy sometimes).

Ruby usually goes back and forth between working with one of us and running over to her play kitchen and recreating what she just did.

I hope her desire to create food for people extends beyond the quarantine!

braces

It finally happened.

For a few years, Maddux's dentist had been hinting that once she lost all of her baby teeth, we would likely be referred to an orthodontist. When the last tooth proved to be stubborn, the dentist pulled it and sent us along.

While Maddux wasn't excited about it, she had been aware it was a likely possibility. And once the dentist indicated that her treatment would last 18months, she did some quick math and told us that we needed to put them on NOW so that she could have them removed the summer before she starts high school.

The process took about two hours, and it was relatively painless (according to Maddux). She has 'bumpers' on the back teeth to prevent her from closing her jaw all of the way (thus knocking the front bottom brackets off), but those should come off when she goes for her next appointment. She will likely have bands to help with an overbite, but the process should be straight forward and Maddux is on schedule to have her mouth metal-free for high school.

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. 

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.

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!

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.

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!!