There’s a saying in medicine: “When you hear hoofbeats, think horses, not zebras.” In other words, the most common answer is usually the correct one. This is good advice when googling your symptoms as well.
But what do you do when it is a zebra?
The last day of February each year is National Rare Disease Day. (Thus encompassing leap day — a rare date for a rare day.) It’s a day to bring together people with rare diseases.
A disease is considered rare when it affects fewer than 1 in 2,000 people. That can be pretty isolating. It means that you may be the only person anyone’s ever heard of with a condition. It may mean there’s not a doctor in your state or in your town familiar with your disease. It may mean treatments that work for others won’t work for you. (But that doesn’t mean you won’t regularly be offered miracle cures by strangers who know nothing about your disease.)
There are 300 million people worldwide with rare diseases. Alone we are rare. Together we are many.
Patrick is rare. Gastroschisis affects 1 in just under 2,000 babies each year. However, Patrick experienced a complication so rare that I can’t find statistics about it. His bowel died, leaving him with Short Gut Syndrome. Short Gut itself only affects 30 of every million people. Only just about 100 intestine transplants are performed each year. Fewer than that are multivisceral. By the numbers, he’s rare.
Patrick and his Beads of Courage: each bead represents a procedure, test, or milestone
I’ve been feeling his uniqueness in other ways this month. Especially at school.
Patrick attends a very unique school, one designed for children with special needs, particularly those with autism. Although Patrick checks all the boxes for an autism and ADHD diagnosis, his diagnosis is not as simple as that. Patrick’s intellectual, memory, and sensory issues come largely from a brain injury he sustained during a cardiac arrest caused by a central line infection when he was a baby. That means that, while many of the things that help autistics help him, there are differences in the help he needs. Also, although he has anxiety, his anxiety isn’t founded in ordinary fears, but in the complex medical trauma that he experienced as a young child.
There is a reason we don’t domesticate zebras. They are in many ways quite like horses. Zebras eat almost the same things as horses. (Almost, but not exactly.) They behave in many of the same ways. But zebras are not the same as horses. And the differences are more than just the stripes.
Zebras are smaller but are very strong. They are not strong in the same ways that horses are; their bodies are not made for riders or for carrying burdens. They don’t run as fast as horses. They have evolved to survive as prey. They are skittish and easily startled, quick and agile, known for a bite and a strong kick. Zebras can be sassy, stubborn, smart, and sensitive.
Zebra keepers know that they need to spend extra time building trust. These animals don’t trust easily. Handlers need to be consistent and gentle. They make sure to feed their zebra personally so that it sees where the food comes from and develops trust. Patient handlers are rewarded with an extremely faithful bond.
But you won’t get there if you treat your zebra like a horse – or even like its closer cousin the donkey.
And this is where my frustration lies this month. I’ve heard teachers say that January and February are when most of the teaching happens in a school year. I don’t know if that’s the reason, but every year in January and February, it seems, we end up talking to teachers about the same thing. Patrick falls behind in these months. And I find myself explaining that he can’t be asked to do the same things as the other students if he’s only offered the same supports they are. His issues with motor skills, memory, spatial reasoning, attention, vision, and math require more.
So we end up talking about IEP accommodations, whether there is sufficient staffing, whether he is too dependent, what is attention seeking or escape, whether staff understands his needs and accommodations, how to help them understand, whether he should have to ask for accommodation so receive them. And all of that leads to the question of whether or not he belongs in the classes he is in. Every few years, this one included, I get a bonus IEP team meeting out of it.
This year is better than some because I know that his teachers actually care and are genuinely trying to find ways to help. At least this year I’m not having to start by trying to convince them that his needs are real. But there is a reason people don’t ride zebras. And there is a reason we are always talking about where we can make compromises.
Patrick and Brian launching a blast car for his science fair project
Next year, Patrick moves into 9th grade. For him, that means moving into high school. And that has opened a whole new set of issues. Demands will be higher. Classes will be harder. It’s getting more and more painful to keep Patrick in grade-level classes without grade-level skills. Because classes are for credit, there are limits to modifications. And he likely will never have the executive skills and memory to handle it alone. The question is if we can find a way to give him enough help to handle it at all. And if doing so is worth it for what he’d get out of it.
So now we are talking about whether or not he should pursue a diploma. Whether he would benefit from some time in a functional skills class. What he will do after high school and what, if any classes, they offer that can help prepare him. And although I’ve known for a long time that Patrick wouldn’t likely get a traditional diploma, or go to college, or have many job options, my heart is having a hard time catching up with my head.
Patrick is a normal teenager in so many ways. He loves his friends. He’s girl crazy. He listens to his music too loud and wastes hours on YouTube. He’s obsessed with cars and can’t wait to own his own. At school with his handful of friends is the one place where I think he truly feels like he belongs and is accepted as himself. His advisory teacher is a keeper in both senses of the word.
Except that, even with a sense of belonging, Patrick doesn’t understand what’s going on a lot of the time and sometimes sits lost and without help for an entire class period. And the question is whether that’s actual belonging. (For Patrick, maybe?)
So here’s to Rare Disease Day, a day dedicated to belonging, even when you are rare.
They say that zebra’s stripes make it harder for a predator to pick an individual out. When many zebras stand together, their uniqueness combined protects the group.
That’s not actually true. Recent research shows the stripes protect against tsetse flies, who are so confused by the pattern that they abandon their attack and fly away. That’s probably more representative of how things work with rare disease zebras. We confuse everyone so much that they flee.
But I like the image of the herd of zebras standing together. So I’m going to stick with it.
I began writing this post last March. And then a pandemic happened and circumstances changed and I abandoned it. But I think the discussion is just as relevant now, if not more so. So I’m going to attempt to dust it off and finish writing it. Here’s how I began…
There is a fairly well-known image that is used in discussions about equality. The picture shows 3 children of different heights trying to watch a baseball game over a fence. In the first frame, each child has a crate to stand on, but only the two tallest children can see over the fence. This frame is labelled “Equality.” In the second frame, the tallest child has given his crate to the shortest child. Now all the children can see. The image is labeled “Equity.”
Over the years the image has circulated, the quality of the graphics, the labels on the message, the symbols have been debated, and the interpretations have been varied. Below is a common one used in education and discussions. The 3rd frame is often labeled “inclusion” and represents the systemic barriers being removed.
It seems that I have been having a LOT of conversations lately about how to include Patrick. Since the start of the (2019-2020) year, we’ve had a lot of new transitions. And that means we’re trying to figure out how to fit into a lot of new settings.
The biggest one has been over the subject of P.E.
Here’s what happened. One of my best friends at Patrick’s school was also working part-time as the elementary school P.E. paraprofessional. (a.k.a non-credentialed teacher.)
One day, she called me up FUMING about what was going on at the school. Apparently, they were having trouble with some students choosing not to participate during P.E. and other “specials” classes. The principal had told the teachers that they needed to give a grade for the class, and since it was a pass/fail class, they were looking at giving failing grades to students who refused to participate.
Enter Patrick. Patrick has a combination of disabilities that prevent him from participating fully in a regular P.E. class. He has cerebral palsy that makes it difficult to control the muscles, particularly those in his legs, especially when running. He has visual tracking problems from his brain injury that make it very difficult for him to follow a ball. He has trouble with motor planning, meaning the ability to think through the steps of a motor process that, for others, wouldn’t be consciously broken down. He has serious ADHD that make it hard for him to focus in a chaotic environment. He has working memory impairments, or in other words, problems with his short term memory that mean he can suddenly forget what he is supposed to be doing. And, to top it off, his transplant puts him at exceptional risk of injury from a fall or a blow to the abdomen and he is required to be excluded from contact sports. (Dodgeball, anyone?)
Patrick’s IEP provides for “adaptive P.E. services,” meaning that instead of being required to pass a regular P.E. class, he gets to work with a special P.E. teacher who adapts P.E. to his abilities and works on specific goals.
The problem is this.. Patrick is in a mainstream classroom. And the schedule of that classroom includes the class going to P.E. while the teacher used that time as prep time in the class. And, even though I knew he couldn’t really play, I didn’t see much harm in allowing him to go to P.E. because that’s what his classmates were doing.
But apparently, what was happening was that Patrick, unable to do what the rest of his class was doing, would try to visit with the adults. His para would tell him he needed to go play, and because he couldn’t, he wouldn’t. He’d just sit on the side and patiently watch.
So, when they started talking about who should receive a failing grade for not participating, Patrick’s name made the list.
My friend was furious because she knew this was wrong. Let’s be honest. No one would have been talking about failing a kid in a wheelchair for not doing P.E. We’d had multiple conversations about what he should and should not be doing as she’d made her lesson plans. So she went to an administrator, who pulled the IEP, marched it into the principal’s office, and demanded that he intervene.
Patrick didn’t fail P.E. But it made some of the staff who work with him angry about how “unfair” that was to the other students who saw him not playing.
But it made me aware that I had not done enough in setting clear expectations for P.E. with the school. Enter advocate mom. I called for a special IEP meeting to get clear adaptations written.
Now, Patrick attends an exceptional school. So when I went into the meeting saying that I needed them to make a plan specifically to allow Patrick to be excluded from the P.E. requirement, they insisted instead that they needed to write a plan for him to be included instead.
Plan A. that they wrote didn’t work. Plan A was to require the paras to lead alternative activity for the students (yes, multiple) who could not do the regular P.E. activity and were sitting out. The argued that they kids who were choosing not to participate would choose the easier activity instead. (In hindsight, I disagree with this opinion. Why not allow mainstream students to sometimes do adapted activities? That’s inclusive, right?)
On to Plan B. My friend, because she knew us personally and cared enough to see the individual, started go over her lesson plans with me at our weekly breakfasts. We’d decide what Patrick could do that was related to her plan. Sometimes, that was giving him a special role in a game. (Basket holder, line judge, etc.) Other times that was giving him a simplified version of the activity. (While the other kids shoot hoops, Patrick will practice passing with the help of an adult.) I dropped in on class unannounced and helped to model what this would be like for the staff that was there.
Plan B is what worked.
And it got me thinking a lot more about inclusion.
In children’s Sunday School, we run through scenarios regularly about how to Choose the Right. And a common example is “There’s a new kid” or “There’s a kid others don’t like” or “There’s a kid who isn’t good at a game” … anyway.. there’s a kid, and the other kids don’t want to let them play or let them eat lunch with them or whatever. What do you do?
The answer is, you let them play anyway. Right?
But is it inclusion if it stops there? Is it enough to “let them” attend? Was it enough that Patrick was sitting in P.E. on the stage alone? He didn’t mind. He didn’t want to play. If you asked him to get up and do what the other kids were doing, he’d give a polite “nah.” He was fine, right? He was welcome.
But is that inclusion?
Look again at the picture at the top of the page. The short kid is invited to watch the baseball game. He’s even given a box. It’s totally fair.
Or is it? Is it more fair to give him the box the tall kid is standing on? That way at least he can see. But the tall kid doesn’t get a box that way. Isn’t it more fair for every kid to get a box?
The thing is, adaptation isn’t fair. But it’s at least a start.
One of the things I love about distance learning is that I’m in charge of the school day, so Patrick actually gets all of his accommodations. We use a Kindle with OpenDyslexic font for reading. He can use special manipulatives or a calculator or Google Home to help with math. And he’s getting very good at using Google Read and Write and other adaptive technology.
Adaptations level the playing field so that physical limitations don’t get in the way of him reaching his potential. In P.E., adaptations were changes to game rules, simplified activities, or special equipment. Patrick’s school spends a lot of time teaching him to advocate for his accommodations. One way we as a society can be more inclusive would be to not push back against allowing these when they are justified.
But inclusion CAN be more than that. Because true inclusion sometimes means being willing to change the rules for everyone.
Think, for example, of food allergies. If someone has a life-threatening food allergy, adaptation would say that you allow that person to bring their own food to lunch, instead of eating what everyone else is eating. But if others at the table are eating the allergen, inviting and allowing differences is still not enough. Allergens can be spread by touch, and so we have nut-free classrooms and even nut-free schools. That’s the only way, literally, than a child can safely come to the table.
If done right, inclusion benefits more than just the person with the most apparent need. But it takes some creativity.
Here’s an example. I taught a Sunday school class for 3 year olds. We had one student who every week hid under the table. We had another student who always wanted to remove her shoes. Yes, we could have said that the rules required that everyone sit on their chairs and wear their shoes. And everyone would have learned the rules. But a couple would have spent so much energy on that lesson that there’d have been no time to talk about Christ. So what did we do? We put away the chairs and we sat on the floor. Everyone was allowed to have their shoes off if they wanted. And kids under the table could see the pictures. The only rule was that they had to allow other kids to have a turn under the table, too. Because ALL 3 year olds are sensory creatures and the adaptation that one needed benefited them all.
But inclusion also means being willing to let go of traditional ways of doing things sometimes. And I think that’s the hardest part.
Sometimes, when I get to speak to a group of Patrick’s peers about inclusion, I read them the book “Can I play too?” by “Mo Willems.” Here’s a read along if you don’t know the story:
I like this story because it really captures in a lot of ways what it’s like to try to play when you have a disability or other difference. 1) We don’t always know how to make it work when we start trying to play. 2) A lot of times, what we try fails. 3) After enough failures, the person with the difference will decide they are causing too much trouble and withdraw. 4) Some of the best solutions are the ones people might never have considered.
This is why I love adaptive sports. Because they remove the primary obstacle to inclusion: winning. They also toss out several rules. I remember attending one adaptive baseball game where a player wanted a hit. So they threw him 27 pitches. 27 misses, and then he knocked it out of the park!! And the crowd went wild as he ran his home run.
This is the picture where the wooden fence has been replaced by a chain link. Where there isn’t an obstacle that gives some an advantage over others. This is what people are referring to when they talk about systemic problems.
For Patrick, being graded on participation a typical P.E. class was a systemic problem.
2020 made us acutely aware of so many other systemic problems. The inequalities revealed in our healthcare system, in our justice system, and so many more all came to the surface in violent and devastating ways. And I think a lot of us feel absolutely helpless in the face of systems that we don’t have any idea how to change.
Because, let’s be honest. Inclusion isn’t always possible. Not all sports can be adaptive. Not all diets can be nut-free. You can’t just say you want a system with more social programs when those programs don’t yet exist. We need to be challenged by school or sports to grow, and that means pushing people to their limits.
You also can’t force inclusion. Another thing that 2020 has shown us is that mandates are met with opposition. That opposition comes because broad mandates create new systemic problems that make people feel overlooked.
The thing is that MOST of us really are trying our best. Most of us do care about doing what is right. And what most of us crave most deeply is to feel seen and valued. Especially for our best efforts, even when they are inadequate.
Columnist David Brooks put it this way:
“Many of our society’s great problems flow from people not feeling seen and known.”
David Brooks, “Finding the Road to Character,” October 2019
He went on to say that a trait we all have to get better at is “the trait of seeing each other deeply and being deeply seen.”
Inclusion doesn’t happen by pulling one group out of the shadows and pushing another into it. This is one of the great risks of today’s cancel culture.
It may be an unpopular idea, but I’m not sure that systems CAN be fixed from the top down. Instead, I think that if we want to see our society change in a significant way, it’s going to need to be something that happens on a much more intimate level.
Here’s another great quote:
I believe the change we seek in ourselves and in he groups we belong to will come less by activism and more by actively trying every day to understand one another.
Sharon Eubank, “By Union of Feeling We Obtain Power with God”, October 2020
To be honest, when large-scale changes have been made to try to include Patrick, the result has almost always been awkwardness that made us ALL pull back. Plan A where they ran a whole separate P.E. section for him would have made everyone feel uncomfortable.
But Plan B worked precisely because it was personal, thoughtful, and simple.
We simply need to start seeing each other.
I think we also need to extend each other more grace. If mortality is a school, then we are all going to make mistakes as we learn. We will all sometimes be on the giving side of some hurts. We would benefit from being as quick to grant forgiveness as we are eager to receive it.
On Valentine’s Day this year, I knew that traditional Valentine’s parties were going to leave out every student who was learning from home. As PTO president, I had some power to try to make things better. So, in addition to providing usual support for valentine’s parties, I spent several hours creating virtual valentine’s exchanges, online games and other activities that could be played with the students both in class and those connecting digitally from home.
Patrick’s sweet teacher went out of her way to buy craft supplies so that the class could make each other valentines. And she instructed the class to remember the kids at home and make them for them, too.
But that left home learners entirely on the outside. they were remembered, but not included. And, I’ll admit, after all my effort, I was hurt to still be literally on the outside looking in.
Some attempts at inclusion are a BIG miss.
But that doesn’t change the fact that he has a teacher who very truly cares about him. Who stays late sometimes just to visit with him after the other students have gone. Carrying that hurt would only hurt me. The slight wasn’t intentional.
Where am I going with all this? I’m not sure I exactly know.
I do hope, though, that if I make our experience seen that it will help as we all try to do better at seeing each other. We have too much anonymity in our society. It’s easy to get caught up in “us” and “them” when you speak generally.
But the more you get to know people as individuals, the more natural it is to try to love and take care of each other. What is that quote? “people are hard to hate close up. Move in.”
In other words, we do start with that sunday school answer. We notice the people sitting on the sidelines and we invite them. But it goes a bit deeper than just inviting. We get to know them.
And then we consider each other’s needs. And we make ourselves open to different ways of doing things. We try. If we fail, we forgive and we try again.
At the end of last February, my family was in Disneyland. If you haven’t noticed from this blog, we’re pretty addicted. And Patrick can only safely be in crowds when they aren’t really crowds. So, when our tax return came in, we seized the opportunity to skip school and visit one of our favorite places.
I remember so clearly, sitting in LAX waiting for our flight home, watching news reports about this new Coronavirus that was plaguing cruise ships and had just been detected in the first U.S. case of community spread in Washington state. Seeing people flying in masks. And beginning to realize that may, just maybe, this virus wasn’t contained.
For the past year, I’ve had the thought several times that I should maybe write a blog post describing what it’s like to be a transplant family in the midst of a pandemic. I’m finding myself with a bit of time on a Sunday afternoon, so I’m going to give it a shot.
I remember going out to breakfast last year with one of my friends and her telling me that I was her barometer.. the person she was watching to know when it was time to panic. “Coronavirus” wasn’t a new word to me. I’ve spent the past 6 years following virus trends on the Germwatch website from our local children’s hospital and I knew that, for most people, Coronavirus was a common cold. I also knew that children especially seemed to do OK with this new virus. Still, nothing is simple with a child as complex as ours. So I reached out to Patrick’s transplant team in Nebraska and his team here in Utah and asked them to tell me how I’d know if we reached a moment where I needed to pull Patrick from school.
After all, his IEP has a specific provision that says that during cases of viral outbreaks, he was to be transitioned to a virtual connection to school.
On March 13, I got an e-mail from the transplant nurse coordinator “recommending our patients do not attend school for the next couple of weeks.” It was a Friday afternoon. I e-mailed Patrick’s teacher to let her know we’d be checking him out and need to figure out how he could participate in class remotely. Less than an hour later, in a press conference, Utah’s governor announced a soft closure of schools for the next week. Cleaning out his locker and saying goodbye to his friends was hard.
Unlike most of our friends, this wasn’t our first experience with quarantine school. Setting Patrick up for school just required pulling out tools I already had. I cleaned off a desk in the basement, gathered school materials, and set up a picture schedule.
I thought we were ready. Until an earthquake hit the morning that our distance learning classes were supposed to start. My emergency instincts kicked in. I can pack an emergency go bag in 15 minutes flat. It’s a matter of survival, and I’ve packed a lot of emergency go bags. But trying to think through packing a bag for dual emergencies of pandemic (that was supposed to keep us inside) and earthquakes (which might force us outside) was an overwhelming idea. And I had to try to accomplish this while trying to stay calm for a child who was terrified by the frequent aftershocks. I was so grateful that morning for video classes where Patrick could connect with his friends and talk about what had happened.
At the beginning of the pandemic, half of the voices were reciting “this is no worse than a cold” while the other half urged us to “flatten the curve.” In other words, to do everything we could to limit the spread so that hospitals would not be overwhelmed and our unprepared medical system and supply stores depleted.
I’d seen overcrowded hospitals first-hand already. Waited hours in emergency rooms because they couldn’t find a bed on the floor and then ended up assigned to the surgical unit or some other unusual corner of the hospital because it was where they could find space, and just being grateful that we weren’t in a windowless storage closet turned hospital room like some patients. And that was in just an average flu season. The idea of 1% or more of the population needing hospital care at once, I knew, was a very real and serious danger.
I also was keeping tabs on the pandemic on the website used to track national drug shortages. We learned to follow this site to keep track of shortages in TPN ingredients. It was terrifying to see basics such as normal saline, antibiotics, and albuterol appear on the list as critically low. I saw families in the support group I run trying to figure out how to handle dressing changes when masks and sterile gloves were nowhere to be found. And heard first-hand of nurse friends using a single surgical mask for an entire shift. We’d been hospitalized on precautions before. That idea alone was frightening. The stories out of Italy and New York on the news were terrifying. But the inside picture showed that the impacts were reaching us, even if the virus outbreak was not. I started a hashtag within the medical advocacy community. #sharethehealth .. begging healthy people not to hoard supplies that our families relied on for day to day survival.
We felt shortages in other places, too. I stopped at a grocery store to pick up a prescription on that March afternoon as I brought Patrick home from school. People were panic shopping. Shelves were emptied. And the interruptions in supply chain that came from everyone leaving the workplace and coming home were felt for months.
It was terrifying at first for all of us. But there was also a tremendous sense of community. Out of shared uncertainty came shared sacrifice. We were unified and united during those first weeks, even months.
But as weeks dragged into months, life had to go on. At first, we’d stop in to less frequented stores to look for staples, odds and ends you couldn’t get other ways. But as stores shortened hours and crowds competed for supplies, we couldn’t afford the exposure of our full grocery shopping trips anymore. So we learned to buy groceries online. Early on, the demand was so high that you had to place your orders days in advance. And then you crossed your fingers and hoped that the store would have some of what you needed. Checking over our grocery order and seeing what was missing or substituted was one of the biggest heartbreaks of my week. We lived a lot out of our food storage that spring.
And then there was the challenge of figuring out how to get other things we needed without going into a store. Easter especially took creativity to pull off. Gradually, businesses started offering curbside service. But for some things, I’d simply have to call the store and beg for someone to take my order on the phone and bring it out to me at my car.
We left home so rarely that any excuse to get out was a treat. One week, we all went to pick up groceries at Walmart. This outing could take an hour or more, as the demand for curbside was so high. That hot afternoon, we sat in our car with the air conditioner on. And then, when the groceries were loaded, Brian tried to start the car. The battery was dead. We begged the person next to us for a jump start, but that didn’t work. There we were, in the parking lot of a store that sold batteries, trying to decide if it was worth the risk to go in. Eventually, we decided the safest option was if Brian walked to an auto parts store in the same parking lot. There, he bought a battery and tools, changed the battery, and we made it home.
One of the hardest parts of being the family of an immune compromised child in this past year has been learning to forgive other people’s thoughtlessness. Too many people repeat “only 1% will die” or “only those with weak immune systems.” Well, yup. That’s our son. “This is no worse than the flu.” Well, he spent 2 weeks in the hospital with intestinal bleeding from norovirus. His tonsils had to be removed because of the risk of developing lymphoma when he had mono. And after his last immunizations, he’d had to spend a week at home because his body didn’t have enough white cells to protect him should he develop a cold. Having a liver, intestine and pancreas transplanted requires a high level of immune suppression, even at the lowest dose. And on top of that, his spleen was removed as part of that surgery, leaving him with even fewer defenses.
Distance learning was intense. In the mornings, we’d have online groups with Patrick’s class. There was only one girl in Patrick’s reading and math groups and our families got really close working together. In the afternoon, we’d come upstairs and doing science and social skills groups. Patrick’s teacher was amazing in finding ways to connect with the students. And in between groups, we’d complete work offline. I learned several new tricks during this time. Discovered online manipulatives. Mastered Google Meet and Google Classroom. It was a lot of work for me as a mom. But it was SO much better than any quarantine school we’d ever experienced before, that I was mostly just grateful. Especially because it kept Patrick from feeling alone.
The stress of suddenly losing all my supports (respite care, school, therapy and everyone else who had been sharing my load with me) and suddenly switching to a full-time job as teacher by day and a full-time role as playmate at night took its toll. Stress combined with my own immune suppression led to a case of shingles. Thankfully, because I’d been vaccinated when I was diagnosed with rheumatoid arthritis and started on immune suppression, it was mild.. a few weeks of pain and a lingering numb spot next to my ribs.
By Memorial Day, people were tired of quarantine and risked family get-togethers. And cases started to rise. We knew that eventually, life would have to reopen. Being a republican state, Utah’s legislature rushed and pressured the state into reopening much more quickly than their own plans suggested was safe. People took this as a sign that things were safe, even though nothing had changed. Still despite the rising cases that resulted, we tried to be enthusiastic for our friends who were able to take advantage of the discovery that the virus didn’t spread much outside. But I’ll never forget Patrick sitting at the window, watching our neighbors host a party with several other families.
Our family eventually got used to the routine of all of us being at home together. Yeast shortages and an abundance of time led me to finally learn how to make sourdough. My grandma was famous for her sourdough and I’m grateful and proud that I was able to master this skill. Also, shortages of food prompted Brian to help me expand my garden and learning about canning. We’d already wanted to do this, and pulling it off in a pandemic without being able to go into stores and nurseries was a bit of a feat. To make things harder, everyone was gardening, too. Still, I’ve always found tending a garden to be healing for my soul. And fresh tomatoes and other vegetables in summer made it worth the effort.
We were lucky as far as friends go, though. Patrick’s best friends were also being careful. And they were eager and willing to stay connected. So we discovered how to do video playdates on Facebook messenger and Google Meet. I found a website where you could upload your own gameboard and recreated a few of Patrick’s favorite games so he could play with friends and family. And we started reading Flat Stanley and mailing our own Stanley around the country.
Early in the pandemic, while cases were low, our extended family rented a house together in Colorado near Mesa Verde. I’m so grateful that they were willing to take the precautions to help make that trip safe because it was so good to spend time with them after so much time apart. We didn’t know how long it would be before we could be in person again.
In July, we decided to skip the noise of fireworks on Pioneer Day and take advantage of relatively low transmission in Wyoming. So we took a road trip up to Mount Rushmore. Most of the trip we were easily able to stay away from other people. We ate in fast food parking lots with all the others because dining rooms were closed. We strategically planned gas and potty stops for less crowded stations. By then, wearing masks got fewer odd looks, at least, even if they mostly weren’t worn in rural areas. Mount Rushmore was so crowded we basically ran in, took a few pictures and ran out, but overall it was a happy distanced trip far from other people. Except the hotels.Being around others in the hotels was nervewracking. Some were obviously clean, others more doubtfully so. Staff wore masks under noses or not at all. I brought cleansers with us and we recleaned the rooms and slept on our own pillows. Thankfully, we only spent the nights there. And in the day, we got to see some beautiful parts of God’s creations that were so close to home, yet we’d never explored.
We are no strangers to masks. Patrick wore masks every time he went in public for the first 6 months after transplant. Gloves, too, that we’d take off and wash when he got home. I started sewing us masks before it was the cool thing to do, as I saw families trying to figure out how to extend the life of their masks for dressing changes.
I read dozens of articles and studies looking for the best patterns and materials and finally settled on 800 count sheets as an interior layer and quilting cotton as an exterior layer. This was based on a study done in England as a sort of pandemic planning that compared different materials. Interestingly, that study hypothesized that the two biggest struggles in widespread mask adoption during a pandemic would be 1) comfort and 2) understanding how to wear a mask properly. It was interesting to see that play out in real life. Especially as a certain viral video hoax convinced so many people that wearing a mask would increase their CO2 and cause them to infect themselves with their own bacteria.
It took a few versions for me to figure it out, but eventually I managed some contoured masks with t-shirt yarn strings that went around your head and were adjusted with a pony bead at the back. They are still our most comfortable and most often worn.
But really, we rarely have to wear masks because we are around other people so rarely. There is some comfort in knowing that there is no grey area for you. Fully quarantining in some ways is easier than the decisions others have to make about risk.
Like returning to school. There was no question there. Patrick would join cohort Z, the all online learning option at his school.
But at a school primarily for children with special needs, most of the students chose to attend in person. It’s the best way for most to get the services they need.
And so, Patrick logs in each morning to a live video stream of his regular classroom. His one friend from spring is also at home and they are still in all their groups together. Our families work together on making learning a success and I’m grateful for their friendship and help.
He has an awesome teacher who does so well making sure that the kids who are online know that she cares and that they are a part of the class. We have our awkward moments. At first, we spent a good part of the time looking at the ceiling of the classroom because they’d forget to adjust the camera after tilting it to talk to us.
But, overall, as far as education goes, this may be one of Patrick’s best years ever. 1) He can adapt his learning to his own pace. He’s with the class, but if we need to take some extra time to finish something or take a break, we can. 2) I am entirely in charge of his IEP goals. It didn’t start out this way. The teacher would send us work. But as he and I were working 1:1 on these goals, my teaching training kicked in and I asked to pick the curriculum. I sent the teacher a copy of the book I wanted to use for math and she gave her blessing. Eventually, I took over all the goals. We just report data back and ask for guidance if we’re stuck. 3) We have enough time in the morning. With meds to give and other things, getting to in-person school on time has been a monumental feat. But we are rarely ever late to class online. If we do happen to be running late, he can just eat at the desk. 4) Patrick always has all the accommodations he needs. I know exactly what he’s doing. And especially with math, that he has to learn in a very unique way, I can pull out whatever manipulatives help. Even make some of my own. No more reminding teachers over and over again that they aren’t following the IEP. 5) We don’t have to fight to figure out inclusion. This deserves an entire post of its own. But long story short, P.E. and recess have long been problems for Patrick. But now our P.E. is guided by an amazing adaptive P.E. teacher and done 1:1 or when he feels up to it. 6) He can eat! And eat. And eat. Getting Patrick to take care of himself physically at school has long been a battle. But at home, he snacks when he needs it. He goes to the bathroom when he needs it. He has gone up 3 shoe sizes in the past year! Gained 16 pounds. He is just 5 inches shorter than me now.
There are some things that I can’t wait to end in this pandemic. But the lessons we’ve learned about education are things I’ll never let go. I hope that no healthy but at-risk child ever has to put up with 2 hours a week of “home hospital” education like we had to do after transplant. We know better now.
Another thing I hope never goes back to the way it was is Sunday. Don’t get me wrong, I miss worshiping in person and desperately miss fellowship with my friends. BUT because our church has a lay ministry, meaning most worthy men are ordained to the priesthood, when churches needed to close, we were given permission to have the priesthood-holders in our home (in this case, my husband) perform the ordinance of the sacrament for us.
About a year before the pandemic, our church switched to a home-centered church-supported model for some of our Sunday School lessons. They provided curriculum, but parents were to teach it at home. Well, that has been a life saver. In fact, being able to customize gospel lessons to Patrick’s way of learning. His gospel knowledge, comfort in the scriptures, and faith have been visibly growing, even if it’s still fairly young and innocent compared to others his age.
And to have Sundays be simply a day of rest, worship, and time together is precious.
As cases began to spike, church leaders directed that sacrament meeting be made available via webcast. At first, we were sad to give up the entirely self-paced Sunday we’d gotten used to. But being able to hear news of our ward and listen to talk and see faces, even if we aren’t seen, has been wonderful. Again, this is one of those things I hope doesn’t soon disappear. As we went months without being able to attend church after transplant, I was often envious of those whose wards had decided to make their meeting available to them via broadcast. It’s a little strange to know that others are attending in person every 2 to 3 weeks. But I know we’re not ready to be there yet, and we’re grateful to connect in the way we can. Similarly, being able to join in Sunday classes via Zoom has been great. (I just wish we weren’t always hurried off by Zoom’s 40 minute timeline.)
Another favorite part of Sundays is family chats. My grandfather is 95 and lives alone. My parents also both have medical conditions that put them at high risk. So the weekly Sunday dinners we’ve known all my life weren’t an option. But I worried about Grandpa and others being alone without regular connections. We started chatting on Sundays and I’ve been able to spend more time talking with my siblings than I have in years.
Holidays have been different. Much more low key. We pretty much skipped Halloween. We focused on Patrick’s birthday instead. We rented a whole movie theater for the three of us just to see a movie. We had a video birthday party with his friends. They played Kahoot and chatted. We bought the candy we wanted for ourselves, put a sign on the door, and hid in the basement from trick-or-treaters. Honestly, it was so nice not to have the birthday rushed through so we could get to the trick-or-treating that, quite honestly, just stressed Patrick and me out.
On Thanksgiving, we hosted jackbox games with our families. And for Christmas, we did gift exchanges and cookie exchanges over video. We had a delightful 2 day road trip getaway to go view the Christmas Star (convergence of Mars and Jupiter) at Goblin Valley in some of the darkest sky country in the country.
Christmas Day has always been hurried for us. Too busy rushing between different families. Spending the day at home playing with toys with a few video chats with family was SUCH a treat.
Reinventing traditions has taken some creativity, but has had such great rewards.
That’s another odd thing about being the 1% during a pandemic. I watch so many people worrying about what they’re missing. They can’t imagine letting go of traditions. They fret about their teenagers missing dances and socials. Their kids missing extracurricular activities. When schools don’t offer them, they create them on their own, despite the risks.
And it makes me sad.. because what they don’t see is that in trying not to miss the old things, they are missing so much else, too.
People hate the phrase “the new normal.” I think because it was thrust on them when they weren’t seeking it. The first time I heard that phrase was at a women’s conference when I was struggling with infertility. I was trying to resolve the gap between my hopes and my reality. And I attended a talk by a couple where the husband had had some sudden, severe health challenges. The wife told her someone had told her to stop trying to make the old normal happen, and to learn to embrace and look for the joy in her new normal. That was a lightbulb moment for me.
When I was getting ready to bring Patrick home from the hospital for the first time, the NICU attending sat down with me for, basically, a pep talk. He warned me that things were not going to feel right. That I was going to think I was failing most of the time. And that I’d at least once be sure I’d killed my son, even though I hadn’t. He told me that finding a new normal takes time. At least a month. And that I needed to grant myself grace while that happened.
I found that timeline to be very true. With every hospitalization, every medical change, every setback or triumph, we’d have to figure out a new routine and a new normal. And depending on the extremity of the change, it could take anywhere from 2 weeks to months before normal came. But it took the longest when I resisted the change.
I’ve spent most of my adult life adjusting to new normals. The Lord loves to reset my life on a moment’s notice. So this isn’t all that unfamiliar for me.
That doesn’t mean that I don’t mourn for the old normal. Let’s be honest, my life ended on March 14. My hobbies, my friendships, my space, my time. Everything I’d built was erased and I got to rebuild it from foundations up with my faith, my family, and my home as the beginning stones. So I miss time with my friends. And I miss having the house to myself. And going out to lunch. And Disneyland. And wandering the produce section of the grocery store. And hearing about my son’s day when I pick him up after school.
One of the hardest parts of this pandemic has been learning to offer grace and forgiveness to those who are actively fighting against “the new normal.” I cringe at social media shares of risky choices and neighborhood parties. It’s hard when that holding on to old things or trying not to miss out sometimes directly affects me. Like when we have to avoid the park on a walk because of the soccer game there with maskless crowds undistanced. Or the time I waited an hour at a restaurant for my curbside order to be brought out because there was a crowd inside and the manager thought he had to keep the line moving and so he didn’t serve anyone not inside the store.
The anger in online communication has been among the worst. And it’s taken me time to learn not to get caught up in it. It’s difficult to bite your tongue when your life for 12 years has been based on trusting the medical profession, understanding epidemiology, following protocols to prevent infectious disease, and reading and interpreting studies. There is really nothing about this pandemic or any of the suggested precautions that is new or surprising to me. This is the same science we’ve known for Patrick’s whole life. Except the human element. I have been surprised by the propaganda, the politics, and the destructive power of the share button. And it sometimes takes conscious effort to keep the real person in mind instead of replying to an online persona. I want to correct misinformation. I want to rage at the lies. But mostly, these are people I love. And only love gets people to listen anyway.
It’s easy to feel unseen, unheard, and unremembered when you are the 1% that’s considered an acceptable loss. Especially when it means you are at home, literally unseen and unheard.
But there have been some miraculous moments of our being seen, too. Like the neighbor who showed up on my doorstep one night with raspberries because I told her I missed them and was having a hard time buying them. Or the amazing group of women who flashmobbed me for my birthday. It’s the texts checking in. The picking up odd items for me while at the store.
(Sidenote: Did you know there are things that stores won’t sell to you online? Toy diecast cars was one. Little Debbie holiday treats, for some reason. And just about every high demand item like hand soap, clorox wipes and toilet paper for a while. I’ve had to learn which stores allow which hard to find items. And we’ve had to give up some other things we used to never live without.)
Being seen is little things. It’s a months long running Marco Polo conversation with one of my best friends (who is also sheltering at home with her 1% son.) And it’s those who still invite and allow me to serve with my talents.
It’s been a privilege to continue to serve as compassionate service leader. Welcoming babies and comforting others through sickness and loss almost entirely through text and phone calls. Helping families who lost someone to this virus has been poignant and sacred. (There’s a red ribbon tied around the trees in my front yard in memory of a neighbor taken by the virus that I don’t know I’ll choose to take down myself.)
I’ve loved continuing to serve as PTO president. I was going to call it off the first year, until I realized that I was the one with the budget for teacher appreciation and the end of year celebrations. I was also the one with experience adapting traditions to crazy health restrictions. So I ended up hosting a week-long game show for our teachers. And I bought gifts and decorations for an end of year reverse parade.
Sometimes I feel like a puppet master running PTO meetings by Google Meet and then giving other commands by text message and sending other parents to do the work I can’t do myself. It’s taken creativity to reinvent school traditions this year. But it’s been a wonderful chance to enjoy and celebrate the now and I hope my efforts have others as we learn a different way to do things.
There have been other hard moments in this year. Not directly from the pandemic, but made harder by it. Rioting and civil unrest. And a windstorm that brought hurricane force winds rarely seen in Utah.
Between the trauma of being woken by an earthquake in March and then a night lying awake listening to that windstorm, Patrick has become pretty skittish about sleep, especially in the morning. He wakes in the morning and lies awake waiting for day to come. I finally taught him how to read a clock, and convinced him he should try to sleep if he wakes before 6.
But most days, since he doesn’t understand time, he lies there and waits for the clock to change. Sometimes for hours. And he’s in my room at 6:04 telling me it’s morning. To survive, we taught him how to serve himself cereal or yogurt or cottage cheese so we could sleep a little longer. Growth comes in unexpected ways.
Finally, an end is in sight for this pandemic. Almost. There are vaccines available. I was nervous at first about their quick development. Until, that is, an infectious disease doctor I trust explained out how the sheer volume of people affected by a pandemic had helped them complete trials faster than usual. No corners were cut, there just were enough people for trials. He also pointed out that the technology had been being developed for years and just needed an application.
Still, we have to wait our turn in line. And unfortunately, there are no pediatric studies complete. So the person in our house who needs the vaccine most, Patrick, may not be able to get it until fall.
There are variants that might be resistant. And no one knows if vaccinated people can spread the virus as can happen with other vaccines.
And with the degree of vaccine hesitancy or outright misinformation, I’m not sure that there will be enough herd immunity available to protect him without being vaccinated himself.
I remember last March reading about the Spanish Flu. I’d downloaded a book thinking “This was a major historical event, and I know nothing about it.” So when I finally was ready to face it, I read that book. And I read historical accounts. That pandemic lasted for 2 years. It looks likely that this one will, too.
So we’ll keep doing what we’re doing. Keeping safe, but not waiting. Being patient, but living the life we have.
There are things we have learned we can do without. I used think that we needed to keep Patrick in therapies as much as possible to help make up for the effects of his brain injury. But when those were cancelled, and I started to put in a full school day with him, it suddenly seemed cruel to make him leave school and still do hours of therapy. After years of attending therapy with him, there is a lot I can do for him naturally in his day anyway.
We learned, however, that we did need other support. The sudden change in activity made the effects of cerebral palsy in his legs so much more severe. Especially in the midst of a growth spurt. Thank goodness for a video consultation with his physical therapist and a dedicated adaptive P.E. teacher, we were able to help me find ways to stretch and strengthen so he could walk more easily again. It helped, but when the weather is warmer, we have a lot of strengthening to do for him and for me. We just don’t get to move enough.
My family is closer than we have ever been. Unlike other trials, we’ve spent this one together, not apart, and it’s brought us close. And despite the outright disasters (multiple) of this past year, we have discovered so many other wonderful things.
I hope we never lose the lessons of family and slowing down.I hope to carry lessons I’ve learned on with me. I hope we don’t resume old habits of ignoring sickness or ignoring those in need around us. That we remember what we’ve learned about staying connected.
One basic principle we computer nerds know.. Sometimes it’s best to just wipe out a computer or a device and rebuild it from scratch. Get rid of the unneeded processes that are bogging the system down. I think that’s kind of what we’re doing now.
If you’ve made it to the end of this long, rambling post.. well, either you’re probably related to me or this pandemic has left you with extra time that you’re trying to fill. Mostly, I’ve written this for myself. To remember what happened this year. And because, as a blogger detailing our transplant journey, it’s worth acknowledging the very unusual experience that it is to be a transplant family during a pandemic.
Whenever I get fatigued by his long, long trial I remind myself that we have been gifted many miracles in Patrick. It is a gift to have him with us at all. He died in my arms and was brought back. He was saved from sepsis more times than I can count. We received another gift in his being made nearly whole by transplant. And I don’t take for granted the gift of his donor who, in a way, lives on in him.
I can be patient and grateful in protecting those gifts. I can be inconvenienced by staying in my comfortable home. We’ve survived things this hard and harder and been sustained.
It is a privilege to be rare, to be the 1%, or even less than 1%. And hopefully what we know from our rare journey can help others. The world has been thrust into our unusual life.
We’ll see if I have more time moving forward to keep up on blogging what it is to be 1% in a pandemic. I have nothing but time, but with distance learning, I also have never had less time. But if you made it to the end here, thanks for listening.
I’d normally pack a post with pictures and maybe someday I’ll go back and do that. But for now, here’s a link to Patrick’s 12th birthday video. That’ll catch you up on pictures till Halloween at least.
Patrick Hoopes 