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!