When I was younger, I thought grief was a thing you did. A stage. A moment. Something you got through. Got over. Got past.
I didn’t know that grief was more like a tattoo — an ink that stays in your skin for the rest of your life. It may fade with time, stretch as you grow, wrinkle with age. Some call grief a scar, but to me, it has more color than that. I think “tattoo” is more accurate, except that you don’t usually choose the pattern of your grief.
Perhaps, though, the best description I’ve heard of grief was written by Heather Schichtel. She calls grief an “impy, uninvited, grievous house guest.” Her piece titled Grief is found in the book Chicken Soup for the Grieving Soul. I recommend you seek it out and read it. It is insightful.
This is how I see my grief now. As an uninvited guest — tall, smug, bony with slick, oily hair. A little like Rumpelstiltskin in the TV series Once Upon a Time. Or like Dickens’ Ebenezer Scrooge. Greedy. Shrewd. Pompous. And a little overdressed for the occasion.
When you first meet grief, he moves in for a while. He fills up all the space, plays his music too loud, talks over your favorite TV show, sits in your favorite chair, throws loud parties at night, and bangs around early in the morning. He leaves his things everywhere. You can’t escape him or ignore him.
Eventually, he moves out, but he comes to visit. A lot. He carpools to work, calls in the middle of the night, comments all over your social media, and shows up unexpectedly at social events. He especially loves holidays and is by your side in every crisis.
Grief comes and goes. Sometimes sad. Sometimes angry. Sometimes resigned.
He shows up unexpectedly. There’s no rhyme or reason to his visits. I can be a stadium full of screaming fans, my team in the lead and in possession of the ball. A foul. A timeout. Fans on the jumbotron. A group of kids showing off on the screen. I think, “I wish Patrick could play so he had friends like that.” And there is grief next to me, feet up, arm around my seat, cold fingers on my shoulder. “Shh,” I say. “I’m watching the game.” But I pass the popcorn. We both know he’s staying a while.
Grief is made of memory. It glistens on his skin. He loves to reminisce. He brings photo albums and keepsakes. He’s chosen “our song” and will make sure it plays on the radio. Sometimes it is healing to take a moment to pause with him and reflect and remember.
Be careful. It is very, very easy to be seduced by him. If you let him, grief will shutter the windows and lock the doors. He’ll tell you only he can understand. He’s a jealous friend. He wants you all to himself, snuggled up in sadness. Bitterness.
Grief is a hoarder. He piles up lost hopes. Old dreams. Broken promises. He says he does it to protect you. He’ll bury you in them if you let him.
There isn’t laughter in his company. Or newness. Or possibility. If we want those things, we have to step away from him. Open the door. Shove off the debris of loss he wraps around us like a cocoon. We may not be able to push him from our lives forever, but can we tell him to stand back. Make room. You may find you leave his unbidden chrysalis with new wings.
As for me, grief and I are old acquaintances now. I met him as a newlywed, trying to start a family. He went with me to doctor’s visits for myself and later for my son. He heard all the diagnoses and prognoses, treatment options, and painful choices. He sat with me in the waiting room and at the hospital bedside. He went with me to register my son for school and sat with me in IEP meetings. He was there through it all.
At first, we didn’t know each other well. I let him push me around. An encounter with him could take my breath away or reduce me to tears. He’d keep me frozen with fear of what else I might feel in his company. With time, however, our relationship has gotten easier.
Sometimes he shows up while I’m making dinner or cleaning the house. He might catch me running errands, scheduling appointments, or answering e-mails.
“What are you up to?””Oh. You again. Go away. I’m busy.”
“What are you doing?”
“I’ve got to get this done before school pickup. Leave me alone.”
“But I’ve got problems for you. Can we talk a while?”
“No.”
“Life is so unfair.”
“It will have to wait.”
“Well, can we watch Netflix?”
“No.”
“Can we grab a snack?”
“No. I don’t have time. Can you just be quiet?”
And so he just stays, looking over my bookshelves and the dishes in my sink, “hmm-ing” here and there judgmentally to remind me he’s there. As if I could forget.
I’ve gotten to know him in the same way that you know an unusual co-worker or estranged family member. Now, when he comes around, I can say, “Oh, that’s just grief. He’s like that.”
Once you know him, you start to spot him following others. Read him in a text. Hear him in an undertone. You’ll see someone sitting alone, eyes cast down. And there he is, lurking behind them. He’ll wave. You’ll wink, sit down, strike up a conversation with his prey. You’ll share some words, some tears, and finally a smile or a laugh. Grief dislikes company and he hates laughter!
But we need to laugh. We need to keep on living.
We do not need to stop our lives to entertain this selfish guest who doesn’t want to leave the house.
We have to set boundaries. Limits. Rules.
If he chooses to follow us to the movies or on vacation or to the science fair, so be it. He can sit in the corner and wait his turn.
Later, there can be quiet moments for reflection. On our terms. We can face him when we choose. Tears can be healing when they are washing wounds instead of oozing from them. But our lives are meant for more than tears.
We are made for joy.
Grief seems to stop time. Life seems to end. Seems to end, but doesn’t. Seems, to end, but still goes on, whether we choose to go with it or not.
I am still alive. And want to look back on my life and see more than just sadness and waiting.
I want to see dreams. And happiness. Silliness. Friendship. Adventure.
I want to see that I’ve tried, even if I’ve failed. I want to look forward, not just downward and backward. I want fresh, vibrant memories alongside the faded ones.
I may not always be able to escape grief. But I’ve learned to tolerate him.
He may still ruin a party with his bad manners and worn-out stories. He may still sulk around and complain. Sometimes we shed a tear together. Sometimes we pick up a broom and clear out the cobwebs. He’s not all bad.
I’m kinder because I’ve known him. More patient. More empathetic. I do not tiptoe around my old friend, grief.
I ask hard questions– talk about taboo subjects. I know grief is like a vampire who shrinks from the light of caring, so I ask. I share. I lift. I cry. He is easier to face when I’m not alone.
I am more open because I’ve known grief. More genuine. I’m not afraid to be vulnerable. Grief has laid me bare.
We are not strangers, grief and I. But, when I look ahead at my life full of moments… My moments… I don’t want to share them all with this melancholy man in his musty old suit. Grief may want to stay with me. But I do not have to stay with him.
Life holds far too much possibility. Too much beauty to sit in darkness.
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 just spent the morning cutting the blooms off of the flowers in my garden. It always looks like a bit of a tragedy. But today it is raining and next week our state will be facing record heat again as a record heat wave and drought covers the western US. If my plants are going to survive, they need to be spending their energy on developing roots and leaves, not flowers.
It’s taken me time to learn this lesson. When I was a little girl, my parents bought trees for our park strip. They gave one to each child. And, man, I love that tree! I tended it every day. I’d even sit under it and read to it because I’d heard that plants grew better when you talked to it. And then one day, my parents pruned it! I was devastated! I cried all evening. I thought I’d never forgive them for making my beautiful tree look so weak and spindly.
Gardener’s know, though, sometimes for plants to grow, they need cutting. (Especially petunias. If you’ve ever known someone with marvelously bushy petunias, you can bet that that gardener regularly trims their plants. Where you cut one stem, two will grow.)
One of the reasons I garden is that while I work, I get glimpses into the methods of the Master Gardener.
As I look at my life, I can see the pruning moments. Times when I couldn’t understand why I was being trimmed back. Times when it seemed so unfair that my one beautiful little blossom that I’d worked so hard to grow would be cut off. I see now things I couldn’t see then about how I was being helped to grow into something grander than would have been possible without the pruning.
Infertility, for example. I thought I had been thoroughly abandoned by the Lord. How was it that everyone else could so easily make a baby and I couldn’t? Was it because the Lord didn’t trust me? Or that I was somehow lacking? Or was it just that He didn’t care? How could my prayers go unanswered. All I wanted was something beautiful.
But had I not had the experiences of infertility, I would never have been prepared for the more beautiful gift of motherhood I’ve been given. Had I not learned to face my anxiety over doctors, could I really have been up for a life in a hospital? Had I not learned to trust in the Lord’s timing, would we have been able to wait six years for the right transplant donor? And had I not learned to that prayers are often answered in ways we didn’t ask, could I have ever made it through the nights that were carried only by prayer?
A Facebook memory this morning reminded me of the struggle it was to take Patrick on his first vacation. He’d been through infection after infection and in the week prior to our scheduled Yellowstone trip had broken his central line twice, requiring ER visits for repair. A prudent nurse knew about our scheduled vacation and pulled strings to send an emergency repair kit with me and train me on how to do the repair during our second ER visit. Thank goodness she did, because just as we crossed the border into Idaho, the line broke again. We ended up at Eastern Idaho Regional Hospital where they could not find anyone qualified to repair the line. In the end, they gave me a nurse, a room, and sterile supplies and I repaired that line myself before we continued on our way to Yellowstone.
Things haven’t come easy for us, and early pruning gave me strength, flexibility and a healthy dose of righteous submission.
COVID has been another period of pruning. Not just for myself, but for the world. So many of those beautiful traditions and even basic comforts were cut and cast aside. We were left with pretty much just our roots. Home, family, faith.
I’ve been alternately inspired and heartbroken watching the world respond to pruning, having experienced so much myself.
Some have really grown stronger in this time. Staying at home gave us time not just to improve our baking and gardening skills, but also to deepen our roots by spending time as families, developing habits of individual worship, tending to the needs of others, and improving talents and characters.
Others have stayed focused on what they weren’t willing to miss, putting proms and parties as first priority, fretting about what they or their children might be missing. Resisting cutting and seeming to try to glue blossoms back onto flowers
I’ve done this at moments in my life, too. It isn’t easy to let go of dreams, traditions, and those milestone moments. I get it! One of the most difficult things about being a parent to a child with special needs is mourning so many lost milestones. We’ve missed or experienced significant delays in first words, first steps, first friendships, attending kindergarten, primary programs, parades, sleepovers, scout camps. We celebrated most holidays in his first year or two of his life in the hospital. The pioneer day fireworks are beautiful, but not the same, from the patio of Primary Children’s Hospital. And every missed milestone has come with tears. It’s ok to grieve unattained wishes. Some are harder to let go than others. (Missing baptism and priesthood ordination, even though I know that Christ’s atonement covers those who are not accountable and promises them salvation, took me a long, long time to accept and I still am caught by unexpected feelings of loss from time to time.)
But the reason I’m posting is that I worry, as the world reopens, that we’ll rush a return to normal so quick that we’ll lose the gifts we’ve gained over this past year.
In my herb garden, I have to take extra care in favorable weather. Once the cool of spring passes and the warms and sunshine of summer arrives cilantro, basil, and other herbs have a tendency to bolt. The very weather that helps them thrive can cause the overeager plants to grow too quickly, rushing to produce flowers. The problem is, once an herb has bolted, it isn’t much good as an herb anymore. There is no choice but to let it go to seed and start again with a new plant.
The solution? Pruning. During the summer months, herbs need to be regularly cut back so that they don’t blossom. The result is healthy, bushy plants with deep roots, strong leaf systems (and since the flavor is in the leaves, better flavor and harvests for the gardeners.)
I see the world hurrying to make up for what was missed and to put aside (a bit prematurely, perhaps) the precautions and lessons of the last year and a half.
As life reopens, I’m trying not to bolt. Patrick’s 2 weeks post vaccination with some hints that he might be protected by it. It’s too early to say, but we have enough confidence that we’re beginning to spend time with vaccinated family and friends. But I’m trying not to hurry. Not just for the protection that being slow and cautious offers, but because I don’t want to lose the blessings we’ve gained by having all the excess trimmed out of my life.
This isn’t easy. I am SO tired of being at home and so frustrated watching as the world reopens to others how it is closing to us.
I worry that if I don’t keep up with regular pruning, that the master gardener might have some more dramatic cutting back to do.
One other thought.. My pruning this morning included giving a very dramatic “haircut” to a very healthy lily. This lily has enjoyed a privileged place next to a sprinkler. It is thriving there, but unfortunately, it has grown so large that it is blocking the water and preventing it from reaching other plants. Sometimes we’re cut back and it seems unfair because it has nothing to do with our own needs. Sometimes, we need to be cut back to allow room for others to grow.
Anyway – those were my thoughts as I was gardening in the rain this morning.
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.
I have never done this and likely won’t do it again anytime soon. But.. this past Sunday Brian and I spoke in church for Mother’s Day. And, as we’re moving soon, was our last opportunity to speak to the congregation we’ve been attending. (I’ll tell you about the move in a post I’m just about to write.)
Back to why I’m sharing a talk in my blog.. Last November or so I found myself wide awake in the middle of the night with this talk in my head. And I had a very clear new interpretation of the parable of the ten virgins that unfolded itself in my mind. I’ve never experienced that before. I doubt I will again.
So – this being the last opportunity to speak, I took some extra time to sit down and study out the thoughts I had that night. I was kind of blown away by what unfolded. And it happened to be just perfect for Mother’s Day, too. The result is the talk that follows. I’m including lots of reference links because there was so much more I could have shared if time had allowed.
The parable
Many of your will recognize the parable of the ten virgins. (Matthew 25)
1 Then shall the kingdom of heaven be likened unto ten virgins, which took their lamps, and went forth to meet the bridegroom. 2 And five of them were wise, and five were foolish. 3 They that were foolish took their lamps, and took no oil with them: 4 But the wise took oil in their vessels with their lamps.
It is a custom among the Jews for the bridegroom to come at night to the bride’s house, where her bridesmaids attended her. When the bridegroom’s approach was announced, the maidens went out with lamps to light his way to the house. The weddings usually began in the evening, with the lamps lit at dusk.
Now, it is of note that each of the virgins came to the wedding with a lamp and with oil. These lamps typically were fueled by olive oil which was inexpensive and readily available. Each came thinking she was prepared. But this parable tells us that, on this occasion, “The bridegroom tarried.”. Contrary to tradition, he came late. At midnight. (Matthew 25:5-6) When the call finally came, some of the bridesmaids found that because of the late hour, their oil was spent (Matthew 25:8) . (About oil lamps and fuel: https://en.wikipedia.org/wiki/Oil_lamp )
What was the difference between the wise and foolish virgins? The foolish virgins brought only the oil in their lamps. While the wise each brought a vessel with other oil. In other words, they came prepared for a wait.
The words of Isaiah could be applied to the wise virgins. “They shall not be ashamed that wait for me.” (Isaiah 49:23).
I want to talk with you about the principle of “waiting on the Lord”. I hope to answer a few questions: Why is waiting a part of Heavenly Father’s plan? How is “waiting on the Lord” different from just waiting? How can we prepare ourselves to wait on the Lord? And what promises are given to those who wait on Him?
When we moved into this ward, we were newlyweds. Brian had just graduated from college and started his career. And we were trying to have a baby.
Now you didn’t know that. We’d been trying for a couple of years, had started to work with doctors. It was just long enough that my feelings about it were pretty raw and I wasn’t ready to tell anyone about the struggle. But I was acutely aware of not yet having any children.
That trial was one of the hardest of my life. I became a bit obsessed with studying the relationship between faith and hope. Convinced that if I had more faith or more hope, that infertility would be easier. I especially loved Hebrews chapter 11 which cites many examples of miracles wrought by faith. I clung to verse 11 which reads:
Through faith also Sara herself received strength to conceive seed, and was delivered of a child when she was past age, because she judged him faithful who had promised.
(I wondered at verse 39. “And these all, having obtained a good report through faith, received not the promise”)
I think the hardest part of that waiting for me was not understanding. I often wondered if the reason I still wasn’t a mother was that I was somehow lacking, unworthy, forgotten or rejected. I struggled with my first question often.
Why is waiting a part of Heavenly Father’s plan?
Waiting plays an important role in our growth in mortality. Most, if not all of us, will have reason at some time or in some way to wait on the Lord. Lehi’s family waited for the promised land. Noah waited for the rain to stop. The early pioneers waited to find Zion.
You likely find yourselves waiting, too. Maybe you’re waiting for motherhood like I was. Or for marriage. Maybe you’re waiting for a loved one to return to the gospel. Or for conflict in your marriage to resolve. Maybe you are waiting to endure a semester, or a difficult assignment, or potty training. Maybe you are waiting for healing or waiting through grief. Maybe you are waiting for direction on a difficult question. Or maybe you are just waiting, trying the best you can to endure to the end.
It is easy in periods of waiting to question why a loving Heavenly Father would seem to stay his hand, especially for those who righteously follow him.
President Dieter F Uchtdorf gave one answer:
I think God knows something we don’t—things that are beyond our capacity to comprehend! Our Father in Heaven is an eternal being whose experience, wisdom, and intelligence are infinitely greater than ours.Not only that, but He is also eternally loving, compassionate, and focused on one blessed goal: to bring to pass our immortality and eternal life.
Keeping in mind our Heavenly Father’s great love, consider another answer from Elder Robert D. Hales:
In my life I have learned that sometimes I do not receive an answer to a prayer because the Lord knows I am not ready. When He does answer, it is often “here a little and there a little” because that is all that I can bear or all I am willing to do.
And don’t forget the answer given to Joseph Smith when his suffering and the suffering of the early Saints led him to proclaim “O God, where art thou?” To him, the Lord said:
My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; (D&C 121:7-8)
All these things shall give thee experience, and shall be for thy good (D&C 122:7)
How is waiting on the Lord different from just waiting?
Robert D. Hales:
What does it mean to wait upon the Lord? In the scriptures, the word wait means to hope, to anticipate, and to trust.
It may sound contradictory to say, but unlike passive waiting, waiting on the Lord is defined by action. While the process is helped by attributes such as faith, patience, humility, meekness, and long-suffering, waiting on the Lord is a form of doing. It is trusting, seeking, obeying, praying, planting, nurturing, submitting, enduring. (see https://speeches.byu.edu/talks/henry-b-eyring_waiting-upon-lord/)
As you can tell, waiting upon the Lord is a skill to be developed. One developed through practice. To that end, the apostle Paul wrote:
But we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope (Romans 5:3)
Waiting on the Lord is being ready to act the moment we are called. It is doing as directed in D&C 33:17:
17 Wherefore, be faithful, praying always, having your lamps trimmed and burning, and oil with you, that you may be ready at the coming of the Bridegroom
How can we prepare ourselves to wait on the Lord?
It is apparent from from the parable of the ten virgins that it is possible to come prepared for waiting. We do this by metaphorically filling and carrying extra vessels of oil.
Consider this counsel given by our prophet, Russell M. Nelson, in our last general conference:
To be sure, there may be times when you feel as though the heavens are closed. But I promise that as you continue to be obedient, expressing gratitude for every blessing the Lord gives you, and as you patiently honor the Lord’s timetable, you will be given the knowledge and understanding you seek. Every blessing the Lord has for you—even miracles—will follow.
We develop the ability to wait upon the Lord as we practice obedience, gratitude, prayer, and patience.
And then? We will eventually see that the heavens were not closed after all.
Elder Uchtdorf put it this way:
Part of our challenge is, I think, that we imagine that God has all of His blessings locked in a huge cloud up in heaven, refusing to give them to us unless we comply with some strict, paternalistic requirements he has set up. But the commandments aren’t like that at all. In reality, Heavenly Father is constantly raining blessings upon us. It is our fear, doubt, and sin that, like an umbrella, block these blessings from reaching us.
What blessings come to those who wait on the Lord?
Consider these comforting words from a loving Father recorded in Doctrine and Covenants 98:
1 Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks; 2 Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament—the Lord hath sworn and decreed that they shall be granted. 3 Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name’s glory, saith the Lord.
Blessings are waiting. Answers are waiting. It may be that you will someday understand the purpose of your waiting. And when you do, you will see that the Lord was there showering you with blessings all along.
After 5 years of infertility, Brian and I received on the same day and in the same moment a clear answer that it was time for us to adopt. We immediately started the application and it was only 9 months later that we received a call telling us about Patrick.
All at once, it became clear that our prayers had, in fact, been heard. We hadn’t been forgotten. In fact, for years we had been very carefully and lovingly prepared for the very challenging task that lay ahead of us. Patrick had been born with a serious birth defect. He was given a 1-2 year chance of survival. He would need constant medical care to survive. And eventually he would need a transplant.
Intestinal transplant was such a new procedure at that time that, had Patrick been born 5 years earlier, his chances of survival would have been very small. Timing was everything for him and for us.
Of course, we traded in one period of waiting on the Lord for another as I became very familiar with the constant waiting that exists in the medical world. From waiting rooms to the transplant waiting list, it seemed my every moment became waiting. We waited 6 years for Patrick’s transplant, struggling with sudden illness, physical limitations, and the knowledge that at any moment he might be called home..
Finally one night at about 10 p.m., as we were turning out the light, the phone rang again. We were told organs were available and we needed to get to Nebraska. Right then. So we grabbed the bags we packed literally years before, called family together for a priesthood blessing, and we went. 24 hours later Patrick was in surgery receiving a new liver, intestine and pancreas.
The few months of recovery that followed were some of the most difficult and sacred of our lives. As we waited for healing, we relied heavily on habits of prayer, fasting, scripture study, and covenant keeping. I came to appreciate the blessings of the sacrament as it was brought to me week after week in his hospital room. Patrick and I held “primary” every Sunday, singing a few songs and telling stories from the lesson manual. We found respite in service to other patients. And we relied heavily on each other and on the Lord.
I have been witness to countless miracles. I have been the recipient of countless acts of service. I have been strengthened when I thought I could not handle another hour.
There is a promise found in the Book of Isaiah:
But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. [Isaiah 40:31]
This Mother’s Day, to any of you who find yourselves waiting, hurting, longing, or afraid.. I bear witness from my experience that this is a promise that the Lord will fulfill for you. Now. While you are waiting. Even if other blessings may still require waiting.
Let me share with you one more promise given voice by President Nelson:
When you reach up for the Lord’s power in your life with the same intensity that a drowning person has when grasping and gasping for air, power from Jesus Christ will be yours. When the Savior knows you truly want to reach up to Him—when He can feel that the greatest desire of your heart is to draw His power into your life—you will be led by the Holy Ghost to know exactly what you should do. When you spiritually stretch beyond anything you have ever done before, then His power will flow into you.
This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.
Patient Zero
How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.
The Onset
Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.
Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.
Diagnosis
So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.
Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.
Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”
Some history
I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).
PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.
And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.
3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.
PTLD workup
Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.
And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.
But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.
So that’s what we did. Headed in prepared for the worst and hoping for the best.
Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.
In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.
In the midst of getting better, we did have one wonderful snow day where we made this snow-Boov in homage to the movie Home. And then had to nap all afternoon to make up for the effort.
Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels. Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.
However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.
And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).
And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.
Meeting with ENT
So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.
We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.
Tonsillectomy and adenoidectomy
So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.
So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.
The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.
And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.
So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.
Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.
Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.
It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.
The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.
But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.
And more observation
When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.
Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.
It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.
They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.
Home again
But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.
Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.
But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.
He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.
This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.
But we’re getting there. And it’s only supposed to last 7-10 days.
And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.
I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.
**Composed yesterday in the surgery waiting room**
This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.
At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line
But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.
Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.
We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.
But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess. For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.
So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals. But overall, this should be pretty easy.
We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous! Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids. But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.
I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.
“I feel better, so much better Thank you doc for taking all the ouchies away. I didn’t feel so good till you fixed me like I knew you would And I feel better. So much better now.”
On Monday, Patrick will be celebrating his 8th birthday. 8! 8 whole years! And 2 whole years since his transplant!
I’m working hard to pulling together his birthday video. We’ve had a big and busy fall so it’s going to be a little late this year. But it’s just astounding to see how he has grown in the past year. In every way.
Last year
This year
The year after transplant, Patrick’s body was shocked and he didn’t grow. But this year we can barely keep up with his clothes. We upgraded him from the only bed he’s ever known, one of those crib-bed combos, because he had gotten too tall for it. His clothes are a medium now and he’s in that awkward size 13 shoe that’s right between little and big kid styles. He is just inches below my shoulder now. And honestly, sometimes I turn around and am surprised to see that he is still small because he feels so big.
He’s grown a lot in spirit, too. For the time being, we have hit upon the perfect mix of medications for his ADHD that keeps him calm and focused while still letting him be his boisterous self. (His psychiatrist warns me he will outgrow these doses soon, but for now they are working.) That has given him the opportunity to grow in a lot of other ways. To sit still and listen and understand. To have his own ideas of how to do things and then to stand up for them. He is becoming more helpful, more responsible, more patient.
He is still the amazingly compassionate child we have always known who is endlessly concerned for the happiness of others. He is the first to give a hug when someone cries. He remembers others’ needs he heard of throughout the day in his prayers. He can tell you all about each of his classmates favorites. And he sees the best in even those who sometimes seem the most different.
With glasses helping his vision, Patrick has grown into a voracious bookworm. He reads all the time. Bedtime reading time is non-negotiable and he’s often found on his bed looking at books. His reading fluency is growing by leaps and bounds. He reads everything to me. And is pretty darn good at spelling. His handwriting is really getting better which is very impressive in light of the fact that he is right-handed and his brain injury has left his right side fairly weak and uncoordinated. He doesn’t like math. But if he forgets to protest because he doesn’t like it, he’s even getting the hang of addition.
We bought a trampoline last spring and Patrick can often be found in the backyard jumping. He went from not jumping evenly with both feet to starting to do jumping tricks. One of our favorite summer passtimes was to go into the backyard and alternate between jumping until he was too tired and reading Dick and Jane. He’s discovering joys we didn’t think possible like bike-riding and swimming.
He earned his Tiger Cub Rank last month and most of the available beltloops. He’s excited to move on to Wolves and we hope he’ll be as happy and welcome in his new den as he was in the one we left. He had a wonderful experience at scout camp this summer. Patrick loves scouting and I love what it teaches about being a good boy and growing into a good man. He is really trying to be trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent… and HUNGRY.
We went to a Patrick’s annual follow-up appointment with his transplant team last week. They were so happy with what they saw in him. The first thing the surgeon said was “well he has changed since we last sawl him,” commenting on how tall and grown-up Patrick seems now. While Patrick sat on Dr. Mercer’s lap and took pictures on his cell phone, we reviewed his diet, growth and medications. With everything going so well, Dr. Mercer decided that Patrick may not still need steroids to prevent rejection. They gave us instructions on how to gradually wean him off of them and the acid controller that they have made necessary for him, too.
He gave him the all-clear for sports. (Adaptive baseball here we come, we hope?) And we decided it’s time to start planning to remove Patrick’s port. With things so stable, they think that he can soon only need labs 4 times a year. That makes the port not worth the risks. Still need to talk to the doctors here about how to go about that.
With so much growth, we faced a big choice for Patrick this year. In the Church of Jesus Christ of Latter-Day Saints, 8 is the age at which children are generally considered old enough (accountable) to be baptized. We believe that younger children are innocent and unable to sin and repent, therefore baptism is not required for them. Most 8 year olds are able to understand enough about the gospel, baptism, promises, and repentance (if not more) to be able to decide if they want to be baptized. Living in Utah, where the church is so prevalent, 8th birthdays are a really big rite of passage.
So we have been watching. And studying. And praying. And finally a few weeks ago we met with our Bishop to talk about baptism. By that interview, the answer was fairly simple. We decided that Patrick is still not at the same level as most 8-year-olds. Right now, he is still innocent. And so, for the time being, he will not be baptized.
For those of you wondering about the doctrinal implications of this, the Book of Mormon teaches:
Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them;
To be clear, Patrick has a very strong love for Heavenly Father and Jesus. Just this morning he refused to get out of the car because I’d forgotten to say a morning prayer and he wanted one. He wants to be baptized. And we believe that in a few years, he’ll be ready to understand and make that choice.
For those with logistical questions: Because we believe Patrick will someday be able to be baptized, we are not doing any replacement baptism celebrations. Those things can wait a couple of years so he can appreciate them. For the first time in his life, something can wait. He has years ahead of him so this is ok.
I’m going to throw in a separate bonus post about this decision, but in light of an 8th birthday, I thought at least this much should be answered for now.
Instead of 8th birthday traditions, we are going to do something that Patrick has rarely experienced in his life. We are going to have a plain old ordinary birthday. With terminal illness, then transplant, birthdays have always been a bit unusual. This year, Patrick’s school is celebrating Halloween today and not next week so he won’t have to share except for trick-or-treating. It’s a long weekend. We’ll have cake and present with family at Sunday dinners. We’ll go to an amusement park on Saturday so he can ride rollercoasters and drive cars. We’ll send treats to school We’ll decorate with a banner and balloons. I’ll make him his choice of dinners. And we’ll have cupcakes and sing to him and open presents. Just us. Just boring. It will be wonderful.
Because he is wonderful. And we have been blessed with a little bit of ordinary. And for Patrick, ordinary deserves to be celebrated.
8 years, buddy! I am so proud of the boy you are becoming.
On the first day of March, I sat in the 3rd grade classroom where I volunteer and I listened to the teacher, Mrs. H., explain to the children that March is either lion or lamb. I had been thinking it, too. We all have heard it. “March comes in like a lion and goes out like a lamb.” We made crafts about it in school. Only Mrs. H. proposed a different idea. Whichever way comes March comes in, it goes out the opposite way. And that particular first day of March, despite a cold wind, was overall quite warm and sunny. She told the children to watch and see if March would go out like a lion.
I saw a lot of lions and lambs in the last few weeks of March this year. The spring equinox was early this year, and so also was Easter. For school schedules, that meant that spring break came earlier than usual this year, too. In some ways, it was just on time for our family.
March started out a little harder for Patrick. And very busy with work and other responsibilities for Brian. Our lemon of a Jeep misbehaved one too many times for our taste. Actually, its radiator literally blew up, revealing another potentially time-consuming and costly repair. And so we decided it was time to buy a new car. That’s great news. And a lot of fun.
Unless… you happen to have an uncontrollable obsession with cars. Shopping for, purchasing, and then adjusting to a new car proved exceptionally difficult for Patrick and led to him being unable to concentrate at home or even at school.
Brian’s work got especially busy right around that time, too. He crammed a business trip, some off-site planning meetings, and 3 middle of the night system upgrades into a period of about 2 weeks. All while fighting a monster of a cold.
Bike riding around Willow Pond
And so when spring break rolled around, I think we all found ourselves more than grateful for the opportunity to escape. Brian saw the long school break on the schedule and decided to treat our family to a vacation. And, as we really only know how to really relax in one place, off to Disneyland we went.
It was a great trip, honestly. With the newfound attention-span Patrick’s medications have given him, he’s started to enjoy feature-length movies of late. And his favorite of all is Cars. He recognizes scenes in the movie from his trips to Disneyland (instead of the other way around, which is priceless.) And so was extremely excited to get to visit Radiator Springs, eat in Flo’s Diner, dance with Luigi’s cousins, and meet all of his friends in person.
We crammed as many rides into our trip as possible. We splurged on a character dining dinner the night we arrived. Patrick loved having mac & cheese pizza, mashed potatoes, corn on the cob, an a bowl of M&M’s while being visited by his favorite characters. Pluto even let him feed him. As a bonus, we then skipped meeting characters this time around, allowing time for extra rides instead. We stayed in a hotel with a pool and went swimming as a family for the first time since Patrick had his line removed. We watched firework on our walk back to the hotel every night. We didn’t sleep enough at night, but enjoyed early mornings in the park. It was a fun trip.
We came home on Saturday afternoon to give ourselves time to get ready for Easter the next morning.
Oh, what a time for the message of Easter for me. While we were in Disneyland, two babies were born in my family. I have a new niece and nephew. Born just a day apart. So before Patrick returned to school, we went and met the new babies.
He doted on them. Patrick loves babies. He kept asking me if he could bring them home. He hugged them too tight. He kissed them. And he promised them he’d be their friend forever. Oh, how he made my heart ache to let there be a baby in our house.
And, oh how he reminded me that it is anything but possible right now. In all his loving attention, he has no idea how strong he is, how fragile they are. And he just can’t understand that they can’t get up and play or eat or talk the way other people can. So thank goodness for baby cousins right now. Because we need babies in our life, even when we can’t have them in our home.
So in the mornings, I kissed and cuddled babies. In stark contrast, in the evening, I said goodbye to a dear friend.
One of the wonderful things about my church is an organization called the Relief Society. Everwhere the church is, the women of the church are gathered together in this organization. And it doesn’t matter how different you may be in age, background, culture, or wealth.. you are sisters. The neighborhood I live in was built new just long ago that many of the people who built the homes originally are reaching the ends of their lives. And so you’d think I’d get used to having to say goodbye to these sisters from time to time.
But sometimes they work their way into your hearts a little more. This friend and I loved many of the same things, despite differences in age. She was a teacher and invited me to translate in her classroom. She was a musician and loved to invite me to sing, and then push my abilities with difficult songs. She was one of Patrick’s biggest fans. And although I’ve known for a couple of months that she had been diagnosed with a terminal illness and that her death was quite merciful, still I think this is one goodbye that will stick with me for a while.
Especially because of timing. In the week after Easter, I greeted two new babies and attended a funeral. In fact, the day of the funeral, I spent the afternoon with Patrick at the 10th birthday party of a classmate. What an interesting sampling of milestones. To see the bookends of life so close together has made me think about the volumes inbetween them.
When I was in high school, we had to memorize a soliloquy from Macbeth. With his castle under attack and everything falling around him, Macbeth receives word that his wife has died. And his reply:
“She should have died hereafter; There would have been a time for such a word.
To-morrow, and to-morrow, and to-morrow Creeps in this petty pace from day to day, To the last syllable of recorded time; And all our yesterdays have lighted fools the way to dusty death. Out, out, brief candle.”
I’m not sure exactly why this pessimistic eulogy has been in my mind. Except the knowledge that it is so wrong. Because life is brief, but so much more than “signifying nothing” as Macbeth lamented. In fact, a funeral reminds us that it is, in fact, all the little nothings, all the everyday things. all the tomorrow and yesterdays and todays full of mostly mundane things that add up to what matters.
Because death isn’t the end. It’s not a period. It’s a comma.
Easter celebrates that fact. Because Christ came. Because of his sacrifice. Because he died, and then after 3 days was resurrected, we all will live again.
There is something wonderful to hope for.
However, I feel that being a full-time caregiver is so perfectly captured, though, in the words “tomorrow, and tomorrow and tomorrow creeps forth in this petty pace from day to day.”
I’ve been struggling a bit this month. I have been feeling lost. Invisible. Mundane. I don’t have the hang of this new life. I have more time, but not complete freedom. I’m not fighting for survival every day, but there is still a lot of resistance in our lives.
Every day certain things must be done. I clean the house and do laundry and do the dishes. I sweep the crumbs of Patrick’s snacks. I put the toys back in the toybox. I shop and plan and make dinners. I prepare medications by measuring, cutting, crushing, and mixing, and then make sure they are given on schedule. I help with homework. I encourage reading. I dress and undress my son. I remind Patrick how to wash his hair. I bring in the mail. I clean off the kitchen table. Over and over again. Only to need to do it again the next day. Or the next hour. I’ve been kept just a little too busy to dare make time for myself but had just enough free time to fret over it.
I’m struggling to get the courage to take time for myself. I’m so used to abandoning what I need to do to take care of Patrick that even though I have a little bit of time, I am timid about branching out. I don’t trust that I’ll be able to finish what I start. And that then I’ll be upset. The problem is that this is kind of a lonely way to approach life. I’m trying to reach out and reestablish relationships that got pushed aside when I didn’t have time to do anything more than survive each day. But that takes courage, too. And although I may sometimes choose to be outgoing, deep down I’m pretty shy.
But, like you, like most of us, I know the best I can do is get up and try again each morning.
We often compared the life we led with Patrick before transplant to a rollercoaster. Thrilling highs and followed by quick plummets. I’d learned to live with that kind of thrill ride. You just hang on tight.
But in Disneyland this last trip, Patrick discovered a new favorite roller coaster: Goofy’s sky school. Instead of fast ups and downs, this ride is a much more gradual descent. Instead, of hills, it’s full of sharp turns that knock the breath out of you. The track is obscured so you don’t always see it coming. Sometimes that’s what this new version of life feels like. It’s been a year since Patrick’s last hospital admission. That is ASTOUNDING to me! It’s been a year since we had to drop everything because he was suddenly fighting to survive.
Let me tell you a bit about what the ride is like these days. It’s gentler, for sure, but it’s no “It’s a Small World” cruise.
Geared up for a snowshoeing field trip at school. Couldn’t ever get him to look at the camera with eyes open.
Patrick’s been struggling with behavior at home and at school. And every note home or call home has left me feeling helpless because, unlike problems with his health that had prescribed medical solutions, this isn’t straight forward. They turn to me for answers and I don’t have them.
He’s doing ok. We’ve been experimenting with changes in his medication and the changes are helping. He is doing better. But the transition has been tricky. And I don’t know if it’s been that, or illness, or hayfever, or growing, or something else but he has been tired and grumpy and not himself. Medicine is more practice than science and when it comes to brain injury, that’s especially frustrating.
We increased his dose of clonidine to see if we could help afternoons go better, and he started to need a nap every day. He hates naps. But he can’t function sometimes without one. I even had to check him out of school and bring him home to nap last week.
We’ve talked to his psychiatrist and adjusted that dosing and talked about trying some other things. It seems to be helping. But it still feels helpless.
With time to kill between doctor’s appointments, Patrick and I stopped in at the museum at Fort Douglas
We had a good scare right before spring break. Patrick was knocked off of the playground at school and landed flat on his stomach. It left a bruise where his g-tube hit and so I had to squeeze in an emergency visit with his GI to check to make sure that his graft wasn’t at risk. That’s a possibility with any injury to his abdomen.
Perhaps the most frustrating thing is that out of the blue, his oral aversions have gotten worse. He won’t take his vitamins anymore in the morning. I crush them and mix them in yogurt so they are easier to eat. He sticks his tongue out to block them going in. Or holds them in his mouth and doesn’t swallow. It’s miserable to watch. But they aren’t optional. They’re mandatory. And so we start many days with me pleading with him to do something that he thinks is torture.
He sprained his ankle at the birthday party. He tried climbing onto a bunkbed and fell off. Patrick’s never really had this kind of injury. With his cerebral palsy, he was especially unsteady limping. He also isn’t used to regular illnesses or injuries still, so he was extremely afraid. Asking him to do what little might help.. Elevation, ice, rest. That only scared him more. He needed extra help getting around, getting dressed, bathing, etc. Thank goodness it was conference weekend so it was ok for him to stay home. He’s spent a few days inside at recess at school. But thankfully he’s healing. He’s limping, but can jump and run and stomp while limping.
Breakfast in the waiting room at the Eccles Outpatient Building
I’m grateful to have had a couple of weeks of bookends. A couple of weeks of being shown things to make me think about what I’m putting inbetween. And a reminder that there are often many volumes in our life. We’re put away the one called “Ultra Short Bowel Syndrome” and are nearly done with another called “Transplant Recovery” but this latest volume of “First grade” has certainly had some unexpected plot twists.
I’m sometimes tempted to pen, like Shakespeare, that tomorrow and tomorrow and tomorrow just keep creeping at their petty pace. But that feeling is only a page in the story.
I heard a talk this weekend that’s helping my sentiments for tomorrow. It was shared in the semiannual general conference of the Church of Jesus Christ of Latter-Day Saints this weekend. The speaker was Elder Jeffrey R. Holland, an apostle and a gifted teacher. Here’s a brief summary.
First, he shared this image that kind of sums up how I sometimes feel when I’m headed to bed and thinking about what I need to do the next day.
Then, he gave this counsel about how to proceed.
“If in the days ahead you see not only limitations in those around you but also find elements in your own life that don’t yet measure up… please don’t be cast down in spirit and don’t give up….”
“Please remember tomorrow, and all the days after that, that the Lord blesses those who want to improve, who accept the need for commandments and try to keep them, who cherish Christlike virtues and strive to the best of their ability to acquire them. If you stumble in that pursuit, so does everyone; the Savior is there to help you keep going. . . ”
And then, in contrast to the pessimistic message of Macbeth, Elder Holland gave this beautiful description of the potential for tomorrow.
“If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children!”
Did you read that? Tomorrow=magnificent. Even if we don’t always recognize it as such.
I’ve got a long way to go. I have a lot to learn about patience. And a lot to learn about humility. I’m finding those lessons are taught in the long, flat, tedious prairies. Not on the peaks.
It snowed the last two days of March. I had to scrape ice off of my car on the last day of spring break. Mrs. H was right. March came in like a lamb and went out like a lion.
It wasn’t an easy month. And April has started out with it’s own measure of sound and fury. We have more milestones: another funeral and a wedding ahead this week. And will still start each and every day with a yucky vitamin.
Snow on spring break of course means a kids meal at Arby’s in your PJ’s
But I’m trying remember Elder Holland’s words:
“So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever.”
Patrick Hoopes 