Every Storm Runs Out of Rain: Emerging from Virus Lockdowns and Vulnerable Populations

How are we going to end the COVID-19 virus lockdowns?  When are we going to go back to normal life?  You are surely wondering this, and your children are certainly asking you!  My teenager and ten year old would like to go back to their soccer games and birthday parties, and to be honest, so would I.  We miss human connection, and the opportunity to be with our tribe.  We miss pot lucks and barbecues, bake sales and tournaments.  We miss it all.  We even miss the things we used to complain about.

People are getting antsy in their second month of home confinement.  The common consensus is that with time, testing and slowly phasing out stay-at-home restrictions that we as a country will get back to normal.  I hate to be the one to break this to you, but this is a very rosy scenario, one that doesn’t take into account states and cities that are harder hit than others.  There’s no magic wand.  It’s not going to all go back to normal all at once.  In fact, it may not ever look the same in our lifetimes.

Most experts are saying normal life won’t resume until 2022.  That’s a long time. I have had a lot of anxiety about re-entering society.  As the mom of a child with multiple medical issues I’m worried about entering society too soon.  My daughter is one of the 20% of Americans who are considered “At Risk,”  along with cancer patients, diabetics, and people with auto-immune disease.  We already live with unpredictable futures and social distance.  We call it the Cost of Living Vibrantly.  If she gets sick, we go to the hospital. If one of her friends or our family gets sick, they notify us and we stay away. We’ve missed family gatherings at Thanksgiving and Easter multiple years due to family illness.  She’s been hospitalized over her birthday and Memorial Day. Everything can be dropped at a moment’s notice,  and though it is disappointing, it is necessary.  My daughter Wendy is exceptionally good at rolling with the punches, and it has served her well throughout her life because she’s missed out on a lot of events.

I’ve recently read a quote from Maya Angelou, who was quoting from a Country song:

“Every Storm Runs Out of Rain.”

It’s a version of “This too shall pass,” the idea that nothing is permanent, that nothing will last forever.  Winston Churchill once famously said, “If you’re going through Hell, keep going.”  But as I was thinking about the Maya Angelou quote more, I got to thinking that maybe we should think about some areas of the country right now as being rainier than others.  If New York City is suffering a deluge, South Dakota is in a drizzle.  Storms cancel events like concerts, soccer games, and other social gatherings.  When the rain or snow clears, and blue skies break through, people can start to go outside and see their friends.   It will be easier to reopen some parts of the country than others, and this is clearly an oversimplification, but it can in some ways be helpful. The question, “Should I go to Boston for my doctor’s appointment?” can be answered with the response, “Nope. Still too rainy.”

People, too, can be too rainy, or can have their own personal rainstorms. I like to think of Olaf from Frozen with his own personal flurry.  Where we live in southern Massachusetts might be ready to reopen, it might be considered “sunny,” but for my daughter, as well as for other people in the “At Risk” population, there’s still a chance for storms.  So we decide to stay home.  There will be a million situations in the next two years when we need to make this kind of decision, and a million situations among all the other twenty percent of people who have a medical condition.  It will be a patchwork quilt of decisions concerning risk and reward.

I would love it if our leaders considered a special recommendation for the “At Risk” population, to know when it’s safe to venture out.  When one out of every five people has a reason to stay inside, it makes sense to know when it’s Partly Cloudy, Chance of Rain, or a violent storm.  The combination of what the rain outside will be, along with personal rain clouds of people, will allow us to make better decisions.

I chafe at the idea that some people are posing that my child’s death, or the death of an elderly citizen, a war vet, or someone with underlying health conditions is an acceptable risk for the country to reopen in order to save the economy. I’ve spent a lot of my life keeping my own daughter alive.  There needs to be special measures put into place to protect as many citizens as possible, for as long as possible.  As I said in my last post, the people who are determining acceptable risk consider their “only” is actually my “everything.”  While I understand there is no playbook available on how re-opening is supposed to go, I beg the people who make these decisions to keep the At Risk population in their calculations for re-opening towns, cities, and states.

Please press your elected officials to consider the At Risk Populations when looking to emerge from Lockdown and stay at home conditions.  Thank you.

 

 

Fear and Resilience: Extreme Social Distancing

Greetings from Northern Vermont,

It has been a crazy week, and I’ve had some time to reflect.  Last week there was a confirmed case connected to Wendy’s high school, and as per her doctor’s recommendation we pulled her out, got a doctor’s note, and began the process of getting her tutored.  I asked if we could get the tutoring remotely because I planned on bringing her up to Vermont to ride out the coronavirus up here.

Because of Wendy’s multiple medical issues, even though she is young and in shape, she is in the twenty percent of people who are at high risk. It hurts my heart when people say that “only” twenty percent are at risk, because their “only” is my “everything.”  When I had spoken to her doctor, she laid it out very clearly to me:  there  is no vaccine, there is no treatment, and if you end up on ECMO, you are going to die, because they can’t do anything else.

So as far as I was concerned, we needed to keep her safe, no matter what.  She and her sister are my everything, not just a portion of the at risk population.

When Wendy called me on Monday morning (3/9) because of the coronavirus case connected to her school, I had just arrived in my parking lot of my own school (I am a middle school teacher at a private school a few miles away.) I informed my front office that I had to go back, told Wendy I would drive around to the back of the school, and then bring her home. She hasn’t been back since.

I then went to my own principal, and together we worked out a “remote teaching” schedule. The computer teacher put a large screen in my room, and colleagues manned the room on their prep periods while I taught classes from my house. This way, I wasn’t bringing home the virus to my daughter without knowing it.  I taught this way for the remainder of the week, until the 13th, and now the school is on our regularly scheduled vacation.  I am so indebted to my colleagues for doing this for me.  But to be honest, I still wasn’t sleeping.  I was worried that my other daughter Penny or my husband would bring home the virus.    We began to cancel social engagements left and right, soccer practices, karate classes, yoga, etc.  My husband asked to work from home, but still had to go in a few times to check on things.

I pulled her younger, healthy sister out of school on Wednesday after Governor Baker said that students would not be penalized for their absences, and when I asked for guidelines on how to teach Penny I was told that teachers were instructed not to give out any work, or any guidelines.  Schools have since been closed by the governor until April 7, but they have not been given any work, and will not be given any in the name of equity, but also because teachers’ unions don’t want to set a precedent.  Wednesday night President Trump gave his Oval Office address and the NBA shut down for the season.  Stock futures plummeted.

On Thursday, 3/12, after I taught my online classes, we made our way up to Vermont.   I had packed the car early in the morning.  Five days’ worth of clothes for each of us, lots of arts and crafts, a few puzzles, some food items I knew Michael wouldn’t eat, all of Wendy’s medical supplies, some games, school books, snow pants and outdoor gear, and yoga mats.  I made clear to the girls that there would be no stops.  No bathroom, no gas, we were travelling door-to-door.  After we unpacked at my parents’ house (they are not here, they’re snowbirds, splitting their year between Vermont and Florida,) I looked to see what they had and what I would need.  The answer:  they didn’t have that much and I was going to need to do a lot of buying.

This was a setback, as I had already prepared our house in Massachusetts.  Now I had to recalculate.  I already had all of Wendy’s medical supplies, but we pretty much needed to get all the food, and I was planning on being here for a month.  We went to the supermarket and bought enough for four weeks of staying here.  People looked at us like we were crazy.  Who needs all that food?  We do, because I don’t plan on going back out.

Here’s the deal.  There are people who have coronavirus with no symptoms, or minimal symptoms, and after testing, scientists at Princeton have found that the coronavirus can stay alive for up to three days on stainless steel and plastic.  So someone who doesn’t know they are sick can leave the virus on an object three days ago, and my kid can get sick from it today.  That’s terrifying.

Moving up to Vermont was strictly a numbers game.  There are fewer people in the state of Vermont than there are within the city limits of Boston.  More people, more potential illness. Fewer people, less potential.

But when I see citizen continue to go to amusement parks, and wearing green to go to  Saint Patrick’s Day parties at bars, or being told to continue going out to dinner, all I want to tell them is PLEASE STAY HOME.  Your social distancing will lead to fewer cases all at once, and fewer cases all at once means that our medical system won’t collapse under the strain.

My friend Susan lives in Rome, and today (3/17) I was going to fly on a plane and visit with her. She works at the UN, in the FAO, and I was going to speak to a committee there about foodborne illness, which is originally how Wendy got sick.  Through her unfortunate experience of living in the age of coronavirus in Italy, Susan has been coaching me on what to expect, how to prepare, and when I suggested Vermont, she thought it was the right move.  In Italy the medical system has collapsed, and the entire country is in lock down, because Italians didn’t take it seriously, didn’t act fast enough. 

We can do better.  We have to do better.

Thank God my parents have this house.  Thank God I have access to it.  Like everyone else, I’m trying to navigate the daily activities of my kids so we all don’t go crazy. We have a schedule, they have academics, and I’m grading papers and working toward my virtual schooling that I will be transitioning to.  We go for daily walks, we are working on a 1000 piece puzzle of Star Wars. After dinner we play UNO and watch something on Netflix on a laptop. (My parents don’t have cable.) We eat lunch and dinner together, and I’m trying to teach them to monitor their snacks, how to do laundry, and how to entertain themselves.

I’ve started offering yoga every morning at 9 am on Facebook Live, as a way to connect to the outside world, and it’s nice to connect to my friends and bring something good into their lives, because like them, I’m in self-isolation.  But for us it’s pretty extreme and the potential consequences are dire.

Honestly, I’m finally sleeping again because we are here, though I miss my husband who is still at our home, with our cats, and who isn’t sure when he will be able to make it up.  Wendy thanked me when we got here, she had been worried too. The girls only want limited knowledge of what is going on in the world, and they don’t want me to talk about number of deaths.  so a lot of that information I have to keep to myself.

Wendy has mentioned to me that in a way she feels like a princess in a tower, like in the fairy tales. I think that’s an accurate way of putting it.  It’s better than being a princess in a hospital bed.  So I guess if we are working through the roles of the fairy tale, then I’m playing the part of both the knight and the dragon, protecting and guarding the kids.

I have no way of knowing what will happen, I can only do what I can to protect my kids.

Please, don’t go out unless you need to.  Practice social distancing so kids like my Wendy, and families like my family, don’t have to practice Extreme Social distancing.  We are scared enough every day as it is.

 

 

 

 

CAREgiving, defined

We will all be CAREgivers at some point in our lives, whether it be to a parent, a spouse, or a child.  When you are a parent of a chronically ill child, it is likely that your CAREgiving duties will overlap, because your child needs constant care, but other people in your life get sick as well.  It can feel overwhelming and isolating all at the same time.

I’ve been thinking a lot about what being a caregiver means, and I’ve come up with a helpful acronym.  A CAREgiver Coordiantes, Advocates, Manages Resources and Educates:

Coordinate.  You coordinate your child’s care.  You arrange for doctors’ appointments, other therapists appointments, prescriptions, food and drink limitations or special considerations. You calibrate any medical devices that your child needs.  You coordinate the care that is necessary daily, weekly, monthly yearly:  finding the people and the products that will best serve your child.

Advocate.  You make sure your child has what they need to be successful in all areas of their life.  You talk to your school administrators, you request an IEP (Individual Education Plan), or a 504 (Individual Medical Plan).  If your child needs certain accommodations, you arrange for them, whether it is a nut-free table at the school lunchroom, or an extra ramp to enter a room more smoothly. Advocating also means making sure the janitor doesn’t wipe the peanut tables and the peanut-free tables with the same sponge.  In my case, advocating means asking the school nurse to write a letter home at the beginning of the school year to remind parents to keep their kids home if they are sick, because they can put my daughter in the hospital. It can also mean speaking out for other children who have the same medical condition, or one similar.  Additionally, it might mean joining a Family Advisory Council or advocacy group in your child’s specific illness, to make the world a better place in the future for your kid and those like your kid.  It’s a large umbrella.

Resource management.  I don’t need to tell you this.  Medical supplies are expensive, even if they’re covered by insurance.  My daughter wears two medical devices, neither of which are fully covered by insurance.  Also not covered are the tegaderm films that go underneath each device.  Occasionally the devices cause a skin infection, so we have to make sure the certain antibiotic topical ointment that works is always at home and always available.  Her anti-rejection meds are covered by insurance but her supplements (that the anti-rejection meds strip from the body) are not.  Quarterly visits with specialists are necessary, along with their co-pays and the occasional trip to the Emergency Room rounds out the payment.  What isn’t said are the things that aren’t bought or are pushed off because of the payments that fulfill medical need.  I’ve had the same snow boots for twenty years and I live in New England, so they get used.  Most of my clothes come from thrift shops.  Michael wears his shoes until literally there are holes in the bottom.  This is how you make money stretch.  And I consider us to be very lucky, we live a good life, with good food and a warm home.

Educate.  Parents of chronically ill kids are constantly educating. We are educating the other adults in our child’s life:  for birthday parties and sleepovers and soccer games. When the time is right, parents educate their children about their illness and (hopefully) help them slowly transition to self-care.  We often educate the public, bringing awareness to our child’s condition, or the condition of those like him or her.  We also educate ourselves, we are mini-experts on our child’s diagnosis and condition, we keep up on the newest technologies and research studies.

This is what we do both as parents and as caregivers, but it’s amplified when you are both parenting your child, and also are a CAREgiver to them.  Now, add onto the fact that other people get sick too, in the short and the long run. What happens when your spouse or your parent, or God forbid, another child gets an extended illness.  Now all of your specialized training gets stretched or even thrown out the window.  You may know all there is to know about your child’s disease, but you’re not a medical professional, you don’t know all the illnesses.  You need to learn a new language, a new set of doctors, a new protocol of medicine.

It’s a terrible burden, and it’s constantly shifting.  It reminds me of the picture of the world, that is being held up by elephants on the back of a turtle.  It’s heavy, unpredictable and unrelenting.

I hate to be gloomy about this because there are beautiful moments to being present in the difficult moments of your loved ones, but it takes practice to see the beautiful moments, the sunrises and the warm cups of coffee, the smiles and the small favors.  None of us knew what we were signing up for when we decided to become parents, there was no instruction manual or warning label.

I take the month of November as a month of gratitude, and write down one thing a day that I’m grateful for.  Some things are quite large and some are tiny. but it’s an actual daily vigilance, because let’s face it, some days really suck.  But even in the worst days there is something to be thankful for if you look hard enough.

Good luck, CAREgiver.  Try to find something beautiful in each day, something you’re grateful for.