29 June 2020

16 Weeks of Living with CF during COVID19

As of today, we've been quarantined for almost 4 months.  So, I thought I'd share a little bit about how our family has been coping with CF during the COVID19 pandemic and our efforts to "re-open" in the community.

For the majority of our time in quarantine, we've been completely self-quarantined.  The CDC has listed cystic fibrosis as one of the diseases that puts a person at high risk for complications of COVID19.  It's still too early to know how exactly COVID19 affects people with CF.

At our most strictest quarantine, we never got within 6 feet of others, got our groceries by delivery only and held playdates online. However, after many weeks in self-quarantine, I began to feel more comfortable considering Waco's COVID numbers were consistently much lower than in other parts of the US.  (For many weeks, we had no more than 5 new cases a day, pretty impressive for a county of 250,000).  As summer approached and I listened to the needs of the children, I began to consider that possibly this moment was the best time (if ever) that we should start thinking about going out and connecting with people again.

The moment I decided to "loosen our belt" really crystalized when Bennett's CF doctor, who was doing a telehealth visit with us at the end of May, suggested that I consider bringing Bennett in to the CF clinic at the end of the summer to do X-rays, PFTs and bloodwork.  She said, "you can do it all at once, right before you have to lockdown again during flu season."  While I agree, my initial thought was: "Oh, wow.  How can we "lock down again" if we've never unlocked ourselves to begin with?"

So, about 4 weeks ago, I started giving serious consideration to restarting hair cuts, dentist appointments and outdoor playdates.  Every decision has been agonizing - deciding what is "safe" and "not safe."  Safe is very relative.  What is worth the risk of my child's health?

I've given up the idea that we can have good mental health and experience completely no COVID risk.  At this point, I'm focused more on mitigating the risk and making any risk as low as possible.

Thankfully, deciding to get haircuts for the children was much easier to make when the kid's hairdresser (whom we love) agreed to do the children's hair outside while wearing a mask.  In 100 degree heat, that's was a pretty big ask.  I'm grateful for a community around us who knows about Bennett's disease and is willing to whatever it takes to keep Bennett safe.

Studies show that ones risk for COVID goes up 19X indoors.  So, I've tried to make sure we stay outdoors whenever we can.

Oliver's orthodontist and the kids' upcoming dentist appointments were harder to decide to do.  But the flip side of waiting out COVID is possibly having braces on longer (which no one should have to endure) and having tooth decay.

COVID numbers in Texas started to radically rise about a week ago.  In one way, it's been scary to feel that COVID is out of control in our state and community.  But, in another way, it's meant no difference for us.  Behaviorally, we've been acting as though it's been out of control for a while.  And we'll continue to, even after the crisis subsides.  I'm grateful that a local law requiring masks was recent enacted.  It has given me the greatest amount of peace at this time.

While we aren't going out of the house much, there are things we've found to do that are safe.  Outside feels freeing.  But, in Texas, the heat is so oppressive right now.

We've been thankful for water toys, ice cream and neighbors who have given us access to their pool when they are out of own.  Last week, we enjoyed horseback riding together (  And, while we couldn't travel to Florida this summer as we had planned, we snuck away for a "COVID19-safe vacation" to an empty home in Louisiana for new scenery.

I'm as anxious as the whole world is for this virus to be over.  I dream of shopping down aisles in a store again, enjoying friends at dinner in a restaurant and no longer feeling anxiety when I get close to people.  There are so many things to miss right now.

I'm afraid our personal quarantine could last at least through next Spring.  And that feels very very long.  But I'm trying to manage these days by focusing only on the day ahead.  

Each day has its hidden gifts, and I'm trying to find and savor them.  COVID19, I've found, is full of opportunities to learn resilience, to be reminded that God is in control and to practice gratitude.