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.

Still in School

We are still in school, three weeks later, which is GREAT news of course. And, as expected by parents of school aged children everywhere, there is a (re) learning curve when it comes to 'how to be' at school.

Ruby is really enjoying school, her teachers, and the friends that are in-person with her. But she is having to be reminded how to line up, how to find and use the proper restroom, how to maintain energy/stamina all day. And also, she is having to learn how to wear a mask all ding-dang day. We worked on mask wearing for at least a month before school returned, and Ruby had built up to 2+ hours (no breaks) before we sent her to school. But, as it is for students of all ages everywhere, wearing a mask in school from 7AM-2PM is hard, especially when you don't really understand why. 

Despite all of that, Ruby's teachers have been amazing with working with her to do all of the things they know she can do. She has about 1/2 of her class in-person with her (the rest are still working from home), and she is still rocking the carpool line in the morning.

For now I think that's all I can ask for!

Back to School

Almost seven full months after leaving the routine of school, Ruby was able to return to the classroom this week. Academically, digital learning was fine because at least half of the time we turned the screen off and worked on our own. But the regression I saw in the areas of socialization and Ruby's ability to work independently was concerning to say the least. All of that to say, this last Monday morning couldn't come fast enough!

Honestly, pulling up to the school and having Ruby get herself out of the car - ALL INDEPENDENTLY - is my new most favorite thing. She had a great first day. She was totally excited to get out of my car, greet the principal and walk into school. She wore her mask pretty much the whole day and loved getting to buy lunch (to eat in the classroom). Day two started great: I teared up as I dropped her off in response to her 'big girl' display in the carpool line: she took off her seatbelt, put on her mask, put on her backpack (all independently) and then waited for me to stop before opening the door on her own, hopping out, turning around and saying, "Bye, Mommy. Love you!". She then shut the door and walked towards the school (like every other student!!) Big time proud moment. The rest of the day had a few challenges (basically testing the waters and figuring out how to be in a school/public place again). 

Day three was amazing with GREAT behavior and engagement. Ruby was so proud of herself too, telling me 'I had a happy day!' when I picked her up that afternoon. Day four was more of the same. She came home with new library books, and she was happy to tell me about her good day again. She's so excited to see so many friends and teachers in person!

All of the Words

As much as I am noticing articulation regression with Ruby, she is still expanding her vocabulary and working 'word bank'. She often gives us a gem of a complete sentence, totally independently and momentarily eases my worries that I still have to model "Can you please turn on music?" to her every single time we get in the car.

• A few weeks ago we were outside enjoying a nice breeze in the middle of the summer and I said, "It's beautiful outside today!" Without missing a beat, Ruby responded, "Yeah. God made it."
• "Absolutely" I love it when she pulls this one out, always in the most appropriate of context and usually pretty articulate.
• "Because" This is her most used word right now when she is talking totally unprompted. She loves to tell you the answer to your question, and then follows it up with "....because......beCAUSE..... because...." The other day I told her we were going to go to the store to get ingredients for dinner. She immediately told me, "OK, we need to get some pasta and sauce because it's my favorite. Then we'll get some hummus because that's for snack beCAUSE after school I'm hungry...
• 
  
  

Another Wave

I've said (mostly to myself) several times during these recent months of the pandemic how much I miss live music. It is something that absolutely fuels me. This has been the longest 'dry spell' I've ever experienced in my adult life and it is wearing on me. I didn't realize how much until this afternoon.

Two years ago I spent 48 hours celebrating a good friend's birthday in Colorado, watching The Revivalists perform at Red Rocks for the first time. Awesome experience, obviously. Thinking back on that experience today, I thought it would be a good idea to listen to a 2019 recording of a show while I was hanging out with Ruby. The first few notes unexpectedly hit me pretty hard. I was overcome with a really heavy feeling in my chest... like grief, which is kind of crazy, right? 

That stinks.

Music is something that always lifts my mood, especially live music, especially from New Orleans, but listening to it today had the opposite effect and I'm not sure how to reconcile that. For as long as I can remember (maybe with the introduction of kids into my life), live shows have provided a bit of a release for me. Regardless of what is going on, while the music is playing, I'm able to unload it all at the door: no parental worries (even when and maybe even especially when they are with me), no responsibilities, no anything other than being present in that moment. I'm such a responsibility-wearing-uptight-type-A that being 100% present is hard for me. So today I'm mourning the last seven-ish months of missed music, including my beloved Jazz Fest.

I know live shows will return, andI know they will be better than ever, but right now that release is not here and I think I need it more than I realized.

A Day in Another Kind of Life

I joked on social media the other day that I felt like we were in some sort of human behavior experiment. Like there is a mad psychologist somewhere watching us on a camera and saying, "Interesting, interesting..... But let's see what happens when we try this."

Sometimes I think I'm being too silent and other times I feel like I'm constantly complaining. I'm not sure which side of that I am landing on with this particular issue, but the more I see our virtual school situation (in our county specifically) labeled as a 'success' in the news and media, the more I realize that, individually, we are so hidden from sight right now that we have to speak up. 

So here goes: This model is not sustainable for our kids. Our teachers are amazing superheroes that pivot and modify and find workarounds to last minute changes on a daily basis even without a pandemic. And they have continued those ninja-like skills during this at-home learning black hole. But it's not enough to make up for the constant upstream swimming necessary for so many learners (especially those who are younger and/or have an IEP). And if we thought teacher burnout was a problem before, this is just expediting and reinforcing it, as they are now often bearing the brunt of student and parent frustration.

In the grand scheme of things though, what's the big deal? An at-home school option sounds like a great alternative to keep us all 'safe'. After all, my (typical, older) child is doing just fine with online learning! (I've come to realize that when the word 'safe' is used these days in regards to school, it actually means 'covid-free'. I disagree with the notion that staying out of schools is 'safe', but that would make this post even longer.) 

Halfway through this second week I decided to start taking 'minutes' throughout our day, just to see if what I was experiencing was really as bad as it felt.

*This was a unique day in the specifics, but not in the overall theme and amount of chaos. The most unique thing about this day was that I finally gave Ruby occasional breaks from the screen. Up until today, we have just powered through.

School hours: 8AM-11:55AM

• 7:56-8:02 - We tried to log in to CTLS on the school tablet, but it after several minutes of waiting to join the class, I checked my email on my personal laptop to find an email from the teacher with a zoom code to use in place of CTLS. Joined class zoom 2 minutes late.
• 8:02-8:16 - Morning meeting (Towards the end it was difficult to keep Ruby in front of the screen as her attentiveness faded as new kids joined and interrupted, also due to long pauses waiting for kids being called on to un-mute themselves and speak.)
• 8:16-8:28 - Class review of rules for digital learning. Ruby was checked out (head down, making sounds with her mouth).
• 8:29-8:31 - Ruby had OT services at 8:30, but CTLS was still not working, so we had to switch to my laptop to retrieve an email from the OT with a link for the zoom. Since it was a link, we had to stay on my laptop for this segment (which continually receives audible notifications not easily turned off at the last minute, which is distracting for Ruby).
• 8:31-8:55 - OT service (working on handwriting). Ruby and the therapist played a game involving generating and writing words starting with a specific letter. I provided physical support for Ruby's writing. 
• 8:55-9:10 - Ruby was resisting rejoining another zoom with her class, so we took a bathroom break and I tried to encourage her.
• 9:10-9:15 - We logged in (back on CTLS now, back on the school provided tablet) while the class was taking an on-screen brain break. Ruby joined in the dancing once I wrangled her in front of the screen.
• 9:15-9:25 - The teacher finished the brain break and told the class that we would pick up with our lesson and start writing based on the book she'd read them while Ruby was in OT. Ruby melted to the ground and said, "no writing!" I had to physically place her in her chair and calm her down, reminding her that I'd help her and that we'd read the book together later. She physically complies, but is lost as she has no context for the conversation/instruction for the assignment as it revolves around the book. I modify the assignment for her and she begins to work.
• 9:30-9:50 - The screen and the constant shifting from teacher to student audio frustrates Ruby to the point of throwing her pencil and saying, "No zoom!" I place a blocker in front of the camera and comfort her as she burst into tears. I remind her that when things are hard, we try harder. (This is her mantra and it helps.) We opt to turn the volume down, keep the screen blocker up and finish our assignment on our own. 
• 9:55-10:20 - We removed the blocker as the class started a math game. Ruby did not want to join in, so it required constant encouragement for her to stay in front of the camera. While she enjoyed the game, the student screen and teacher screen change up made it hard to maintain focus. After 25 minutes, she was starting to flop out of her chair again. I put the screen blocker up and let her sit and independently read for 15 minutes.
• 10:35-10:45 - She resisted returning to the desk to do the math worksheet associated with the lesson (the one we missed while she was reading). This took a lot of coaxing and encouraging.
• 10:45-10:55 - We worked on her math worksheet independently. The class logged off to go to PE (through CTLS, on the tablet).
• 10:58-11:07 - Ruby and I 'waited' in the CTLS waiting room (on the tablet AND my laptop) for almost 10 minutes, checking email the whole time for another link, as we were unable to join/never approved to join. 
• 11:07-11:25 - Ruby and I made up our own PE class.
• 11:25-11:40 - We rejoined her class on CTLS (tablet) and a few kids mentioned not being able to join as well. The teacher started the video for phonics but had to pause several times as they could see some students not participating. (Ruby was losing focus quickly with the pauses.)
• 11:40-11:47 - The teachers' screens dropped out of the zoom. We logged out and back in, changed devices, but each time we rejoined all we saw were the other students trying to do the same. 
• 11:47 - We logged out and did our own phonics lesson to end our day.

Guys, this is happening EVERY day. I know the start of a new school year takes some ramping up and has hiccups, but when those things happen in person, kids have peers to get comfort from and watch for coping strategies. And they have teachers, amazing teachers, for hugs and words of encouragement. Why aren't hugs from mom enough right now? Why can't they just look to siblings or parents for comfort when times are tough? Because they need independence and reassurance that it's not just mom and dad that can help them! Because they need to learn from people other than those they live with (and they do learn differently from other people too, which is necessary)!

And before you say it, I know...Ruby's face-to-face school days are not often easy and perfect. BUT the physical transitions throughout the day, the peer modeling, the multi-sensory approach to instruction, the supports she has through her IEP...these are just a few of the ways that help her stay engaged have a higher success and participation rate.

We currently find ourselves stuck between 'we can't do this anymore' and 'we don't have a choice'. We could pull Ruby out of school and officially home school her, but that decision comes with risks for Ruby. From other parents who have gone before me I know that taking a break to home school takes away the opportunity for data collection to support her ability to succeed in a typical classroom. In other words, if we take Ruby out of the school system, when we return there is a (good?) chance she will not be able to return to the inclusive environment we've worked so hard to achieve.

So here we are.

Fear

For many of us, I think the fear of this virus is actually the fear of making the wrong choice and getting sick. The ripple effect of not wearing a mask while grocery shopping or not washing your hands long enough after touching a door knob is what has many of us weighing every decision heavily. This fear and risk analysis for everyday life decisions is something that many people are facing for the first time, which might be why it is so heightened, but it is something our family has been operating at for a lot of Ruby's life. 

It started when she was born and the doctors instructed us to keep her about 6' from anyone who did not have a whooping cough vaccine for the first 6-9 months of her life. Then she was hospitalized for RSV and bronchiolitis just before her first birthday. And of course I've blogged many times about Ruby's cancer and what the treatment did to her immune system both during and since. 

Our family is familiar with the world being a 'risky' place. We definitely quarantined ourselves when we had to, when the risk was too great for Ruby. But we did our best to balance that with living that life we were trying to protect whenever possible. Ruby had six round of chemotherapy, each aiming to and resulting in bottoming out her white blood cell count (aka zero immune system). We were having blood draws several times a week to monitor those counts, and when they were low, we stayed indoors and sanitized everything. Masks, foam antibacterial and gloves were staples in our house. But once those counts climbed to a safer (notice I didn't say safe) level, we resumed some 'life' for the sake of our developing two-year old who was already having to miss out on so many things in her young life. And each time during those low counts, Ruby would run a fever, landing her a 3-5 night stay in the hospital. 

We have no way of knowing if she would have still spiked those fevers had we stayed in complete lock-down the entire time. We did all we could to minimize the risk of her getting sick, but she still did sometimes. And so did other kids we knew who were more strict with their lockdown. So which of us made the right choice? Who is to say...

After Ruby was done with treatment, her prevalence towards picking up all of the colds and illnesses continued. In fact, we just celebrated the first full year of Ruby's life that she's NOT had to be admitted to the hospital. Since Ruby was born we have always had to weigh the risks and benefits when it comes to decisions about school, activities, exposure...

I feel like I'm writing in circles now. I have three kids that make me question everything I ever thought I knew because of my 'fear' that I'm not making the right choices regarding their health, their upbringing, their schooling. Parental fear is real. And I don't have a great plan for how the schools should reopen, but I know there are many brilliant parents and teachers and administrators that DO have well-thought out ideas about how to make it happen. For our family, with our experiences, some type of in-person instruction and socialization is the right decision FOR NOW. (Even though we only have that option for one of the three kids.)

Somewhere along the way it feels as though we all shifted from 'flatten the curve' and 'minimize the risk' to 'avoid getting sick at all costs' and 'eliminate all risk'. As I've said before, I hope that we are remembering that the lives we are attempting to protect are full lives, not days that blend together, at best. The impacts on the best-case-home-scenario families are significant, but on the homes with less support, less stability, less funds, less domestic safety...what is happening to those families should be where our fear lies. I've heard from doctors and teachers in contact with some of those families, and the lack of in-person school has been devestating. I hope that we can find our way back to our schools in some capacity soon, a few hours a day, a few days a week, a few classes at a time...something to stop living in this current state of never-ending 'pause'. 

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.

Growing Up

For about five years, we've gathered this crazy group of kids for an annual picture. Something a little more 'formal' than the everyday ones we catch as they do life together.

Travel and then a pandemic pushed us back into the summer; we usually do this during the holidays.

So many fun relationships in here...I love seeing the personalities come out year after year, both inside of the photos and in my backseat and backyard.

These kids started their relationships before Ruby was even born, when the only school kids we had were two brand new kindergarten boys. They each have connections in fun and unique ways.

My circus. My monkeys. So so so thankful for the community we have with this family!

Joy

She lives her life out loud. 

So full of joy and laughter.

Even in these times when she rarely gets to leave her yard, she exudes joy!

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!

Breaking Out

We've been stuck inside a lot. Inside our house, and inside of our neighborhood. We are so blessed that we've had the option to walk around our neighborhood to get some fresh air, but at this stage of the quarantine, we are desperate for some new scenery. 

So Ruby and I took the car for a drive around some 'empty' spaces today. 

We ended up at a field I've shot some photos at before and it was a welcomed adventure. 

Ruby had a great time looking for flowers and playing in the tall grass. (No snakes today, thankfully!) 

It was just what we both needed.

Drive In Wedding

And here we are, celebrating yet another milestone that has had to drastically change during these crazy times. We've known the bride and groom since they were in elementary school. We've had the pleasure of working with them in the areas of music and photography and general church youth things. Their wedding was planned before COVID was what it is now, but rather than let that get them down or cancel their wedding, they just shifted and made an unforgettable drive-in wedding. 

Maddux and Ruby were still part of the wedding party that walked down the outdoor aisle, only to return to our car. 

Eli and Lehr were dapper guests, dressed to the nines. 

(I was shooting, so I was able to have a front row seat to the entire day.) 

It was not what the couple planned on, but I can say it is a wedding our family will always remember!

margin

whenever we find it in our busy schedule, i get excited and find myself breathing it in deeply.

the randomly discovered friday night or sunday afternoon that we end up riding our bikes on the beltline or playing in the yard is so coveted but so hard to come by.

when the spread of the virus reached the point that warranted school closing, our family went into shelter-in-place mode. ruby's lungs and immune system are inconsistently compromised, so we don't need to take any unnecessary chances. it's my opinion that if we are going to do this, let's do it all of the way.

the first week found us learning the new normal with school, work and play all taking place at home. there were some bumps along the way, but for the most part, we transitioned quickly and jumped right on board with the extra time to just 'be' as a family.

what that is currently looking like is breakfast and lunch with at least one other person, savored 'coffee' time (ruby drinks 'coffee milk' or 'fancy milk' in a mug with her pinky up), bike rides, family walks, evening foot golf in our yard, dinner together EVERY night, lots of family movie nights, random house organizations and yard projects, and chalk. so. much. chalk.

there was never a better time to have a new driveway and back deck - i am SO grateful that we were able to replace those two things in the last three years. they have made this time much more comfortable. and the timing of this life shutdown in our kids' lives is on-point. in another few years eli might be away at college, and maddux could be driving. having this happen while we are all under this roof still is a gift.

but most of all, i'm in awe of all of the margin we've been afforded. it's pretty much a 180-degree shift from our usual life, and as much as we love all of our music and sports and activities and therapies and gatherings with others, this never-knowing-what-time-it-is, nowhere-to-be, party of five lifestyle is working pretty well for us.

creature of habit

that's me. lehr can testify to the amount of things that i will accept and live with, simply because i always have. for example, we had an end-of-hose sprayer with ten different options of spray. all last year i only used two of the options because they were the only two that worked without significant leaking. even though I would have benefitted from having access to the other options, i never replaced it. maybe it was laziness, maybe cheapness, but mostly i just got used to it and accepted it for what 'normal' was. this is played out again and again in my life.

one might think that a great shift in 'normal' would be traumatic to a creature of habit like myself, but i find that most of the time, the idea of changing isn't something i welcome, but the actual change doesn't take long for me to adjust to. i think i don't resist once the change is inevitable because to do that would prolong the 'in limbo' part. that's the part where i feel a lack of ownership over the circumstances. like i'm driving someone else's car or using someone else's computer.

that's a long winded way to say that after a few days of being short on patience with my family (likely due to the underlying stress that we were (are??) feeling that first week with all of the uncertainty, all of us, even the creature of habit mom, have been able to find a lot of lemonade stands within this lemon farm.

big naked

you crack me up. daily, you crack me up.

for as long as i can remember, eliason kids have had to be reminded, 'no naked in the halls!'

you are no exception.

the other night as we were getting you ready for your bath, your shirt was off and you told me, "i'm little naked, mommy." i laughed and agreed. then, when your pants were off too, you grinned and said, "now i'm BIG naked."

Deja Vu

Strange times, eh?

I think we can all agree that there is at least some part of what is happening right now that is severely jarring to each and every one of us. While I definitely fall in the camp of 'sufficiently jarred', some of this feels a bit too familiar.

The hardest part of Ruby's cancer experience for me was the social distancing and isolation. Even as an introvert, there were many days when I found it very difficult to be confined to the AFLAC wing for a week, or confined to the whole hospital for a month, while we lived there. And the days when Ruby (meaning me too) was quarrantined to her hospital room only? Dark days.

When we were released to go home it was a little better because we were in our own familiar space, but we still had to wash our hands like crazy, limit external exposure to Ruby most of the time, and 'foam in and foam out' anytime we touched her, which was a lot because she was two years old! (By the way, I absolutely acknowledge that the fact that this was the hardest part is a HUGE blessing...it still blows me away that we were so fortunate that her health or health decline wasn't the hardest part.)

That was a hard seven months, but one thing that wasn't hard was knowing what to do when we were at home or at the hospital and something went 'wrong' with her health. Call the doctor and head straight to the hospital. No questions asked and I always felt confident that it was the best decision I could make if Ruby spiked a fever.

While this new or temporary 'normal' that we are living is difficult to navigate for those of us who love our free day-to-day lives, the other side of it is equally as hard: the health concerns. So many of us are tiptoeing around, sterilizing and distancing like crazy to protect our family members who are more prone, and to do our part to keep everyone safe so that we can all return to 'normal' as soon as possible. But underneath that task is the fear that it's not enough, and that the big bad virus will still get us.

My family, even Ruby, might be ok even if this thing shows up in my house, but my fears are about knowing what to do. Specifically what to do if one of us has symptoms requiring medical help? Last night I realized why that is such a big concern for me.

Every spring Ruby suffers from the seasonal allergies that plague so many of us when the yellow fog rolls in. For her it means some congestion, particularly in her chest, and random fevers. (I know..that doesn't make sense. I can't explain it, but she always spikes anywhere from 100-102ish fevers for short stints during allergy season. She gets sent home from school with 101, only to register 98 or 99 the rest of the day...sometimes she's otherwise fine, sometimes she's rundown. No rhyme or reason that we can find: it's baffling.)

That season just started in our neck of the woods, and last night Ruby kept getting out of her bed. Around 11, Lehr noticed she was warm, so he took her temp to verify: 102-degrees. We gave her some Tylenol and kept her in bed with us so we could monitor her through the night. Her breathing was really fast, so we decided to give her a nebulizer breathing treatment (she hasn't needed one since June!). Lehr measured her oxygen levels and they were fine, but the rapid breathing and heart rate was terrifying. Eventually it slowed down to a 'normal' speed, but while it was racing, I kept having a terrifying back-and-forth conversation in my head regarding calling the doctor. I know we should have, and would have under other circumstances, but that seemed like a scary option because I felt like they would send us to the hospital, and would that really be a good place to go right now? Especially because we didn't (and don't) suspect that she has the virus?

Oye...so much to think about. That was my long winded way of saying that right now it is hard for all of us to navigate everything, including health decisions about ourselves and our kids.