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.

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.

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.