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.
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.
This blog has been quiet for a while. It takes time and work to get settled into a new home, school, and life. Honestly, for the first several months I was just unpacking and painting and decorating in every moment I could get. It’s been a year and a half and that job still feels less than half done, though I’m sure it’s not that bad.
That first summer, we unpacked what was necessary and otherwise I tried to focus on having summer. In this neighborhood, there are “summer recreation” classes at the park in the summer. On the days we didn’t have class, we had therapy. We decided to shift some of his goals towards life skills and so our therapy sessions went to the grocery store where Patrick practiced not running into me with the cart and walking as slow as the other shoppers.
At the end of June, Brian and I had the amazing opportunity to visit Rome, Milan and Paris together. I can’t tell you how amazing it was to get to visit the Vatican Museums, the cathedrals, the Louvre, the Duomo. To just soak up all of that early renaissance art. To see the evidence of the reawakening after the dark ages and apostasy, as people’s hearts began to turn again to their Maker and their Savior. We also learned to make real pizza dough (with a lot of help), spent 3 hours being taught about mosaic and micromosaic art from the family who maintains the amazing mosaics at St. Peter’s Basillica and other masterpieces around Italy.
That was perhaps my favorite experience. Another was visiting the construction site of the Latter-Day Saint Temple in Rome. It was humbling to walk where early apostles had walked, and then to stand on land dedicated by living apostles for the same work. Brian ran into a family that he knew from his mission there and we ended up spending hours learning about the symbolism and architecture in the temple. (Such as marble replicas of the statues of the apostles made from marble from the same quarry that Michelangelo used for his sacred sculpture, Pieta, for example.)
After several days in Rome, we took a train to Milan to catch up with a friend of Brian’s who was living there. And then we flew to Paris where we spent a day before flying home. We were so exhausted that we went to bed while the sun was up that day.
I returned home just on time for July 4th while Brian went on to work in Ukraine. Patrick and I celebrated the 4th by immersing ourselves in parades, fireworks, and all of the other things our new neighborhood had to offer.
The rest of our summer was a little surreal. We had moved from such busy responsibilities and lives. But we weren’t busy yet, except with unpacking. I spent most summer evenings sitting in the window or in the front yard reading the entire Harry Potter series while Patrick rode bikes in the front yard with the neighborhood kids. We were really blessed that first year to have a lot of kids his age available to play with just outside the front yard.
July and August went quickly and soon, Patrick was in school. Moving Patrick to this school and moving to be close to it was worth all of the sacrifice it took to get him here. His teacher this year was amazing! I walked out of our first IEP meeting just stunned. I’d known that Patrick’s IEP was weak and even more weakly honored. Honestly, we all had a good laugh at just how terrible it was. Then, they went through and fixed it. Made goals that really would make a difference for Patrick. Offered enough support to actually make those goals work.
And then, for the reset of the year, they actually worked on those goals. I’ve known for years that Patrick’s strength was reading and spelling and was frustrated to know that he wasn’t being taught even what would have been basically offered in kindergarten and first grade about phonics. I did all I could to make up for it at home, but since his evenings were filled with laborious and frustrating homework that could take 3 hours or more, there just wasn’t opportunity for me to do so.
Well, this year, Patrick actually gained a grade level in reading. For the first time since kindergarten. And his self-esteem just soared. He also came home excitedly talking about things he’d learned in science or social skills.
Math is still his hardest subject and he’s missing some foundations, but although a lot was over his head, he understood place value and basic fractions. And, at the least, he was excited to try instead of frustrated by the same things over and over again.
Also, amazingly, he made friends. In fact, he made a best friend. Who, although he moved from the school mid-year, we have been able to spend a lot of time with this summer. And it’s been thrilling to see him with another child who shares his obsession with cars and just enjoys his company.
While Patrick was at school, I unpacked, painted, went to the temple, went out to breakfasts and lunches with new and old friends, read the Book of Mormon, and then started an intense study of the New Testament. I volunteered in his class teaching music every other week. And I helped his teacher, or at least tried to help his teacher, turn her ideas for fun projects and field trips and class parties into reality. I dressed as a witch and made a witches brew for Halloween, for example. I also got involved with the PTO the school tried to start this year. And by the end of the school year, had somewhat accidentally stepped into a leadership role there. I’ll be co-president this year with another mom who’s become a great friend and hope I’m not in over my head.
Also, I spent a good part of the school year being sick. Or taking care of Patrick while he was sick. The treatment for my Rheumatoid Arthritis is immune suppression. And I had completely underestimated how having both mother and son with weak immune systems could affect the family. Patrick and I took turns catching things and giving them to each other. I have never experienced illness like this before in my life.
I’m happy to report that the RA is not as severe as it was before I started treatment. It’s rare for me to have knees so unsteady I can’t walk or hands so swollen that I can’t straighten my fingers. But it also isn’t entirely gone. And the busy year and change in routine means I am not as strong as I was when I moved here. One of my goals in this coming year is daily exercise and hopefully some strengthening so that I can walk 2 miles without pain again.
This disease has been a different kind of trial for me as I learn to keep going when I hurt or am sick. I am trying to learn not to complain and not to quit. But to rest when needed. And it’s a hard lesson in patience.
At least, I have a great example in my son. And a very supportive husband.
Speaking of Brian, his responsibilities at work have just continued to grow. He heads 5 teams now. He’s been put in charge of fraud prevention, in addition to development and management duties. And that’s pushing him into the field of security more and more. And honestly, I don’t know how he could have kept up with both this intense level of responsibility at work and continued in the bishopric (meaning one of two assistants to the lay bishop in our local congregation).
He’s currently working as both cub scout committee chair and scout committee chair, as well as building scheduler. So he’s busy, but a different kind of busy.
I taught the 4 year old Sunday School class for a year, and have recently changed from that responsibility to being in charge of the Compassionate Service committee at church. Basically, that means that I help coordinate meal trains when someone is sick, has a baby, or is otherwise struggling. I terribly spending Sundays with the sweet little children. However, it is wonderful to be able to turn my years of trials into a chance to serve others. I owe an unpayable debt of gratitude for all of the times we have been ministered to.
In spring we did a consultation with Shriner’s Hospital for a second opinion on his cerebral palsy. Ultimately, we decided that any treatment would be far too traumatic to be beneficial for him. And that we should just find ways to let him play.
So, we signed him up for an adaptive soccer team, which proves to be much more productive than physical therapy for keeping him active. He had a great time! We can’t wait for it to come back in fall.
Shriner’s also helped us to trade his little training wheels for big “fat wheels” adaptive wheels on his bike, which has helped him gain confidence in riding. And we’re working on helping him get brave enough to go around the block.
It’s summer again. We’ve spent the past few months at summer rec in the park. His best friend’s mom and I signed the boys up for summer rec classes together and so we’d see them at class and then get together to play once a week or so.
Patrick also asked for swimming lessons, so we’ve had private lessons once a week at the pool near home. It’s slow progress, but he’s slowly getting over his fear. I’m also hoping this is helping to strengthen him. Though right now, he needs a whole day to recover after a half hour swimming.
Brian’s Ukraine trip was in spring this year. So we’ve had several family vacations this summer. A family reunion in Montana. Patrick’s aunt bought him a fishing pole and sparked a love of fishing in him. (Although he’s currently fishing without a hook and I don’t know how he’ll react when there are actual fish involved.)
Not long after, we decided to take our first family tent camping trip. Patrick did amazingly! Slept happily in the tent both nights. Complained about the idea of roasting hot dogs on the first, and then devoured several.
And just a few weeks ago, we took a spontaneous trip to Disneyland because we’d heard that crowds were smaller than average for summer. They were. It was hot, but a lot of fun!
We don’t have may medical updates. We celebrated the 4th anniversary of Patrick’s transplant and the 10th anniversary of his cardiac arrest this year. Patrick has outgrown his allergy to peanuts entirely. He is still allergic to eggs, but as long as they are cooked, he does ok with them. The worst reaction we have noticed is a fine rash when he eats mayo-based products. We’re hoping that with increased exposure, those reactions will get less and less until they’re not a concern anymore. Tree nuts, however. Patrick’s reaction to tree nuts is still in the scary range. So we carry epi and avoid cashews, pistachios, and all their family. It’s August again and back to school is just around the corner. I’m nervous as always about him being in a new class. But I’ve heard great things about the new teacher.
We’ve had some great blessings over this past year. I’ll be honest, though. Picking up and moving our family was a little tough. It’s taken time to make friends, find routines, and feel like we were at home. It’s made us grow in good ways.
An example. Or maybe a metaphor. Our new house is in an area with a very high water table and, as a result, basements are not very deep here. And all of the homes have long entry stairways. Add to that high ceilings that are popular in newer homes and there are a LOT more stairs in my house now than before.
A lot of people questioned whether this was a smart choice for someone who was just diagnosed arthritis. But there’s been an unexpected blessing in it. Doing more and longer flights of stairs every day has strengthened my knees.
Moving has made me stronger in other ways, too. It took me out of my comfort zone. It took Patrick out of HIS comfort zone, which was especially hard for him. We have been incredibly blessed by this new home. Sometimes because it made things easier. And sometimes because it made things harder.
It’s been a good year, and really a good summer. And I’m excited for the opportunities that fall brings as we’re starting to find our rhythm in this new place.
It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.
I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.
Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.
BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.
Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.
Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.
So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.
The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.
And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.
I am exhausted and I hurt everywhere. And there is so much still to do.
That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?
I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.
Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.
And, well, one came back positive.
As it turns out, I have rheumatoid arthritis.
Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.
RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.
The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.
So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.
It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.
On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.
And I’m thankfully so very busy with the move that I can’t really think too much about it right now.
It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.
The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.
This morning, I got a concerned Facebook message from a woman I’ve never met, but who knows one of my friends and apparently has been following this blog. I haven’t been writing. She was concerned.
To all of you, friends, acquaintances, and family, especially those who have relied on this blog for updates.. can I say I’m sorry? This has been a growing year for me personally and I haven’t been writing because I’ve been busy with a lot of things.
The short version is this (and I really need to devote a post to this topic)… I went to a doctor in December and learned that 8 years of full-time caregiving and saying “I can’t take more care of myself. I’m taking care of my family” kind of all came together into one disaster for my health. I discovered I had high blood pressure, overweight, out of shape, one seriously messed up knee, and was borderline prediabetic.
This may sound like bad news, but really, for a long time I put myself last. And this was just the nudge I needed to recognize that if I wanted to continue to be the kind of mom I wanted to be, some things needed to change. So I started working with doctors and a physical therapist. I got a gym membership. I started tracking what I ate. I got started meds for blood pressure. I pushed for asthma testing, got diagnosed, and started taking medications to bring that and allergies in control. I discovered kinesiology tape tape. I kept up with regular counseling because this was a serious blow to my ego and I had a month where I tangoed a bit with anxiety and depression. I gave myself tennis elbow. And tendonitis in several other ways as well. I adopted the motto “Pain is temporary. Quitting is forever.”
And after a fair amount of time and effort, I’m happy to say that I’m making some progress. I’ve lost some weight (more still to go) and kept it off. Most of those health issues are considered well managed. I’ve been hiking and biking and swimming and playing on the trampoline with my family in ways I haven’t been able to in a very long time.
But learning to take better care of myself has been a learning curve and it often didn’t leave me much other time.
Meanwhile, though… life went on. And in the short version, here are a few of the highlights.
We went to Disneyland. Because we are seriously addicted. It was spring break and far too busy and I’m not sure I’ll ever choose to go during spring break again. Highlight of the trip for Patrick was meeting Doc McStuffins. Though he pointed out to us that she was too big. And couldn’t talk. Highlights for the grownups: We went on a foodie adventure and tried several secret menu options. Mac and Cheese in a breadbowl proved too big for any of us to eat. But the cinnamon roll at the Starbucks inside of California Adventure was delightful! And the World of Color Dessert Party was more than worth it.
We tagged along with Daddy on a business trip to St. George. We surprised Patrick by taking him to visit Pioneer Park, a state park full of Utah’s trademark red rock formations. He was upset the park didn’t have a playground. Then he surprised us by absolutely loving climbing the rocks.
We discovered and signed Patrick up for an adaptive baseball team. In adaptive baseball everyone fields, hits and runs. You can use a tee or they’ll pitch to you until you hit the ball. There are no strikes. There are no outs. You play at least 2 innings per team. More if you’re having fun. Or you can quit early if everyone is cold or tired. Everyone cheers for everyone. It is, perhaps, my favorite form of baseball ever. Patrick loved his uniform and his coaches and his teammates. He hated fielding, but kind of liked tracing letters in the dirt. He tried to learn to throw the ball in fancy ways and ended up with a crazy windup the always landed the ball behind him. He got a little bit better at hitting off the tee. And then, like nothing.. the season was over. We had a great time. And will certainly be back next year.
Patrick wrapped up 2nd grade with a fair amount of success… stronger in reading and finally making progress in math. He had an amazing 1:1 para for the 2nd half of the year when his previous aide got promoted. She brought out the best in him for sure.
The bishop went on vacation for a month, leaving Brian in charge. That was a fun adventure. Patrick helped housesit there and also for another neighbor.. and we learned that he is a REALLY good housesitter. He’s not quite tall enough to get all the mail from the mailbox. And he isn’t strong enough to pull a hose around. But…He NEVER forgets that we need to pick up the mail or water the lawn. And he’s not afraid to ask for help. He earned a little bit of money doing it and used it to buy some toy cars and a fidget spinner.
Our ABA provider completely and totally screwed us up. We’d assumed that Patrick could get into their treatment center for summer services, then were told he couldn’t, then were told he could. And then, after a lot of back and forth and spotty service for the first month of summer, finally provided us with the right medical forms. Only to read them over and decide they didn’t want that liability. So I ended up with a lot of unexpected 1 on 1 time with Patrick. We got a museum pass and did our usual tour of museums and zoos, etc. We played with kiwi crates. We worked in dollar store workbooks. We practiced some educational computer games a lot. We got through, but it was a pretty messy and disorganized start.
I signed Patrick up for adaptive swim lessons. With no central line, this is now a possibility, and Patrick really needed somewhere to go and some help with his fear of water. His mom really needed a way to keep exercising and a minute of respite. Thankfully, he had an amazing teacher who was totally fine with me swimming laps while she taught him. And he got brave enough by the end of the summer to float, dunk his head under the water, blow bubbles.. and he was working on learning how to move his arms to swim.
Also, as a summer highlight… we bought a pass to the local amusement park, Lagoon, and Patrick and I spent several days up there over the summer. They would totally burn him out. We’d leave with him starving. He’d down an entire Arby’s kids meal on the drive home and then fall asleep for hours. He loves the rollercoaster, the small ones. He loved riding kid rides without me. He loves bumper cars. Or any cars really.
Our motto of the summer was “I can do it myself” and Patrick did make some great progress in learning to heat up simple foods in the microwave, get the mail, water the lawn, play in the neighborhood, fold his own laundry, clean up after himself, write more neatly and on and on. He grew a lot!
Oh, and one other summer highlight. Thanks to our awesome respite provider who is a teacher and had extra time because it was summer, Brian and I took a weekend getaway to San Diego. Just because. We slept in every morning. Played tourist and foodies. Even pulled of tickets to a baseball game. 3rd row on the 3rd base line.
And then, in fall:
Patrick started 3rd grade. He’s now the old kid in his class. I think the 2nd oldest by 3 days, if I remember right. They had a bunch of 1st graders start this year. Half the class is tiny. Half the class is big like Patrick. He’s not used to being the big kid and the first couple of weeks he would just reach a breaking point shortly after school, yell, throw, and then collapse in tears at the frustration of having to hold it together and watch out for the little ones.
His amazing aide got a great job offer a week before school started. That didn’t really help things. The first week, I tagged along and helped at lunch at the school. (And especially the first day when they had a class full of brand new kids and an eclipse viewing party to try to pull off safely.) By the 2nd week ,they had hired a new aide. And she’s really been kind of amazing for him. She’s older that his other paras have been. Which is kind of nice in that she’s not as afraid of getting in trouble for advocating for him. She’s really been quite kind and attentive and helpful. And she has really taken to the task of helping his eating. She asked for a menu of what he could purchase at lunch and has him buying and eating boxed ham and turkey sandwiches on wheat bread. He ate a whole banana for him a couple of days ago! This is perfectly timed as a summer of swimming caused some weight loss and the dietitian wasn’t exactly happy with me for it.
Also, I started a new role as PTA treasurer. This has been a much bigger and busier job than I imagined. But it’s also been good for me in a new world of not always putting myself last. I mentioned to Patrick’s teacher that I used to do bookkeeping. She looked at me and and said, “You used to do a lot of things.” And she’s right. I did. I had a lot of years single and then more years married without kids. And I did a lot of things. Now that Patrick’s health is better, it’s fun to be doing some of those things again.
I’ve kind of dived in full-time as a volunteer. PTA (which is settling down now that we are past the start of the year a little.) Still volunteering with reading groups. Primary music in the children’s sunday school at church. And in this past month, I’ve been asked to be Patrick’s cub scout leader. That’s another thing that happened this fall. Patrick earned his wolf rank. So he moved into the bear den a month early with me. We’ve done neighborhood cleanup with garden tools, woodworking, and pocket knives so far. Wednesdays are crazy. But I love being a scout.
Patrick’s settling in at school. Reading 100 words a minute. That’s not counting the random words he’s picked up from his scripture study. Like abominations (pronounced “abominable nations” by him.)
I threw a fit and got all new ABA providers and that has helped a great deal. I feel like he’s making progress on most of our goals there. He wrapped up an OT session and is diving into PT again with focus on learning how to throw, catch, bounce and dribble a ball. So far, his schoolwork is almost all review and far too easy. And he’s really becoming quite grown up and and helpful around home. I love hearing his thoughts.
Anxiety has been bad for him of late. He started stuttering over the summer when he’s nervous about what he’s saying. So far everyone tells me not to worry and he’ll outgrow it. His fear of rims without hubcaps has reached a peak and I sometimes have a hard time helping him be brave enough to walk past school buses at the end of the day.
I’m hoping it’s just the start of school and the difficult memories fall weather can bring.
We’re headed for his 3rd annual post-transplant checkup in a few weeks and I’ll try to update on that soon.
And in the meantime… well of course we had to go back to Disneyland last week. This time’s highlight? Brian went to Disney Institute, a leadership training workshop.. for work. We got to stay in the Grand California hotel. Which mean walking out of our hotel straight into either downtown Disney or California Adventure. It was a treat to just return to the room if we forgot something or were tired. Also, as Patrick just discovered a love for the Toy Story movies, and since Brian was travelling ahead, we sent a Buzz and a Woody doll ahead with daddy that were waiting in the room when we arrived. Patrick had a happy little Toy Story binge in Disneyland.
Patrick has entered a new phase for rides. While he still loves his roller coasters and the Small World.. he also discovered the storybook rides. Peter Pan. Mr Toad’s Wild Ride. Pinocchio. That he couldn’t stand before. We discovered this at the end of our last day, alas. But it means some different experiences next time I’m sure. Also of note, we made him ride Splash Mountain. (He loves the log flume at the park near home.) That was a little scary. But we all survived.
Anyway, dear Laura… and our other family, friends and followers who have wondered where we went this past year and what we were doing.. that is what is happening. I haven’t been this busy since before we adopted Patrick. I’m not used to it. I’m used to surviving and being trapped in a hospital or at home by health issues. I’m not used to meeting deadlines and being places when I promise. I’m used to having to always cancel plans, not making and keeping them.
Hopefully I’ll get better at this with time. But for now, just know that we are ok. And if I’m not finding time to sit down and write, it means that we’re not quarantined, not in a waiting room, not hospitalized. We’re out and living. And we’re not very efficient at it yet.
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.
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.
We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.
About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.
They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.
He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.
Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.
The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.
Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.
The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.
The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.
Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.
A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.
We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.
After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.
And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.
The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.
The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.
It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.
We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.
And then, we caught the flight home.
I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.
In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.
Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.
Well, Patrick’s been in first grade for 3 weeks now. I love seeing him becoming comfortable at school. He loves his teacher. He has been matched with a very good aide. He’s making friends in his class. I think the work is just challenging enough. So far, things are going well.
It wasn’t our smoothest start. When the official first day of school in the district rolled around and Patrick didn’t go because they weren’t ready, I took it harder than I expected. Not only was I beyond tired at that point, but I felt a little left behind. We did our best to make sure that Patrick didn’t know the difference. And thank goodness his respite provider was trying to pick up extra hours before leaving for school because she came and kept him company that few extra days.
I also decided that if you can’t be in school when everyone else is, you might as well take advantage of it. Patrick Make-a-Wish trip came with free passes to several amusement parks for a year from the date of his trip. Including one near home. So I hinted, maybe even begged, Brian to take the afternoon off of work and we went to play at Lagoon.
We did it kind of spontaneously so we surprised Patrick with it. I don’t think he knew that we had roller coasters close to home. He could have stayed all day. In fact, used to Disneyland 3-day-passes, he was a little confused when we left and didn’t come back the next day.
He was a little skittish after trying the regular “white” roller coaster.. a good old fashioned wooden rollercoaster. So kiddie-land was his cup of tea. Especially when he got to “drive a car” all by himself. I think he’d have stayed on that one ride all day. We stayed till we got tired and cold from being wet from the water rides.
And eventually, Monday morning did come and Patrick got to go back to school. I spent most of the first couple of days going back and forth training the school staff. They were very nervous about lunch and potty and g-tube medications and allergies. So I’d come back at lunch and for mini training sessions. And I think I eventually helped them see that what we were asking is new but not really hard. And, honestly, not really necessary most of the time.
I think Patrick’s doing pretty darn well at school. We all wondered how he’d take being away from home for 7 hours a day. That is probably the hardest thing. He comes home exhausted every day. He had been used to a mandatory afternoon rest time and he’s not getting that right now.
He’s also starving when he gets home to me. I think he’s doing pretty well eating away from me for the first time. But sometimes the temptation of friends and recess is great and he hurries through lunch. Thankfully, his education plan includes snack times and a water bottle at his desk and he’s doing ok with those things. But I’m not surprised that he’s lost a little bit of weight since school started and I’m not certain that we’re going to make the goal of 100% oral eating this month. (It’s hard when we are 95% there!)
But we’re starting to get a routine regardless. Patrick’s school starts late so there is time for me to make sure he gets a good breakfast at home before we leave. If we’re really on point, we even get to the school with a little time for him to play on the playground. Then we visit the potty and then take Patrick to computer lab. Because of the breakfast in the classroom program, I drop Patrick off there so he misses that extra allergy risk.
After school, Patrick expects me to be waiting with a piece of string cheese. We are finding that letting him have a single small portion of dairy once a day seems to be the right balance and he’s in love with string cheese. Then we drive home and he gets to snack and play and rest however he chooses. Lately, his preference is to play in the yard with his ride-on car and bike and hope that the little boy across the street will come join him. But some days he’s tired and so we snuggle up on the beanbag in the basement and watch TV.
After dinner, we buckle down and do his homework. We’re trying to figure out the right balance between making him practice writing and making sure he doesn’t get frustrated. Dyspraxia, or motor impairment from Patrick’s brain injury, makes writing frustrating sometimes. Especially when he’s tired. But with a mix of stamps and tracing we usually make it through.
So far, he’s putting up with math better than I’m used to. They’re working on writing numbers and counting right now. Basically, he’s working in the math book he started but didn’t get a chance to finish last year. This is good. I’m wishing I’d realized I had access to that when we were in Nebraska because it gives a better foundation.. But at least he’s getting it now.
They’ve put Patrick the medium level reading group at school. He’s still got some to make up from kindergarten there, too. But he has a real knack for it. He is reading me little sight word/rebus readers every night right now without any hesitation. And he aced his last spelling test.
The biggest struggle right now is the potty at school. Because Patrick knows how to push through being uncomfortable, he seems to be having little problem with the idea of holding it for the entire school day. At first, he was just making it till his aide left at 2. But I put him leakier pull-ups. One accident and he started waiting for me to come at 3:30.
I started praying for a solution and the Lord sent a very interesting solution. A stomach bug.
We went to Denver for Brian’s nephew’s baptism. And on the 2nd night there, Patrick woke up at 1:30 a.m. and asked me to take him to the potty. Note: Patrick has historically had pretty big anxiety about unfamiliar potties. So that really surprised me.
The next day, that kind of became the story of the day. Trips to the potty. Lots and lots of trips to the potty. My knees were sore from all the trips up and down stairs and kneeling on the floor.
We were pretty worried about this. Diarrhea is a REALLY bad thing for intestinal transplant patients. It can mean rapid dehydration. It can mean developmental setbacks. And it can be a sign of rejection.
We should have been comforted that Patrick ran no fevers. At first we were. I was pretty certain that his upset stomach was a side effect of my letting him try both whipped cream and sour cream in the same day. But to the transplant team, no fevers made the odds of rejection higher. His symptoms lasted almost a week before improving and we had lots of conversations with his wonderful GI here as well as the transplant team in Nebraska. Thankfully, his labwork stayed stable. And I’m pretty proud of our ability to keep up with hydration using pedialyte through his g-tube.
Then, a few days in, I came down with the bug too. Who knew I’d ever be grateful for catching illnesses from my son. But it tells us when something is contagious and not malignant. And so far, I think it means that he gets to miss the opportunity of a sedated biopsy.
Patrick missed a couple of days of school because of being sick. But at least for me, he started using the potty there. And if he at least will go when I drop him off and pick him up, that’s one hour less of him just trying not to go. He’s gone for other teachers, too. Just not his aide.
As for me… well, I don’t think I have the hang of things personally yet. I’m struggling to figure out how to work in appointments with school. Patrick’s had two half-days missed to go to appointments and subsequent make-up work. Plus make-up work for sick days. I’m grateful that his teacher sends the work home so that he doesn’t fall behind. But he’s not so much of a fan of the extra homework.
I’m not sure quite what to do with myself during the day, either. The first couple of days. I did nothing. Binged on Netflix. Ate foods that I wouldn’t make with Patrick home. (That first lunch that I didn’t have to consider Patrick’s food was a strange feeling.)
I’m doing some better quality scripture study for the first time in a while. I’ve even got a study notebook that I’m writing in. I’ll admit, though that I tried going back to traditional paper scriptures and I’m too hooked on the features of electronic study on my phone or tablet. It’s too nice to follow a footnote with a link or search a thought on the internet and find more information on it. Plus, I’m building a pretty nice little electronic annotation library of my own. (Seriously, look into the LDS Gospel Library App sometime. It’s got so much more in it than just fitting the whole Bible, Book of Mormon, and sunday school and institute manuals in your pocket.)
Some days I’m diligent and work on cleaning. I still feel wholly in over my head there. We have deep cleaning projects left from the summer before transplant. But I’m doing my best to chip away at it. I’m doing much better keeping up on the regular cleaning and the yard work. I’ve cleaned out a few cupboards. Cataloged surplus medical supplies to donate. Canned tomatoes. Practiced the piano. Gone for walks. Finished a book. Filed medical bills and spent a lot of time on the phone making sure the last of what’s left from this spring is squared away.
A lot of my days have still been devoted to taking care of Patrick so I haven’t really scratched the surface of what I dreamed of doing with this time.
But today – well, today I decided it was time to update the blog. I’ve put it off too long. And when I get behind, it’s always harder to write. Because I know the post will end up long like this.
I dream of a schedule where I have blogging day and laundry day and volunteer at the school day and regular exercise and study and visits with family. Maybe someday.
Blogging has been on my to do list for a couple of days. But when I sat down to write last night, I was so full of the thoughts and worries of that 48 hour period that I forgot there were other events last week that I’d meant to write about.
We had a couple of appointment last week. We finally got back in to see Patrick’s psychologist yesterday. Can I tell you how amazing she is? When Patrick’s insurance case manager called me to tell me about a new Autism clinic that she’d seen open at the University of Utah THE SAME DAY THAT SHE CALLED I was pretty speculative. Especially since we have never been big fans of the diagnosis of autism for Patrick. Spectrum diagnoses are tricky and, while time and learning have convinced me that Patrick does have struggles that fit into the definition of autism, his presentation is so atypical that I don’t feel like the diagnosis serves him well. Well, unless you are dealing with someone who really does understand autism spectrum disorders. Which the people at this clinic really do. And for all that I don’t willingly introduce Patrick as autistic, we have found the autism clinic to be a tremendous help for us. I’ve been anxious to get him back.
When Patrick met “Dr. Joo-la” and her “piggies” (guinea pigs) there was an instant connection. I could see that he clicked with her and listened to what she said to him.As icing on the cake, she also saw that with the responsibilities of being his caregiver, I wasn’t going to have a chance to go seek other help for myself. She told me in the first meeting that if we sometimes needed to spend sessions talking about and taking care of me, too, that she considered that an important part of taking care of Patrick.
This last visit, I took her up on that. First of all, she spent a lot of the session reassuring me that Patrick really HAS made great progress. I’ve said before that it doesn’t seem like he is as plagued by constant sensory seeking as he was before. She pointed that out, too. Saying he seemed more focused, more grown up. Of course, his exploding language skills are an amazing step.
She reminded me not to be overwhelmed by after-school meltdowns. Pointed out that we had the same problems last fall, too. And she helped me brainstorm ways to make coming home from school perhaps a little better.
She also reminded me not to feel guilty about not being able to do all my heart says I should be providing for Patrick. She’s been following this blog, so I know that she was aware when she told me that she knew that a lot of days, we are just still surviving the day. She encouraged me to embrace summer school as respite time for me and NOT to try to spend it doing things for him or feeling like I need to save them from problem behaviors. I really need to call and see if it’s an option for me to swim in the mornings while he’s at school. If not, at the least there is a track at the high school on the same campus and I can walk.
And then she reminded me that I need help and tried to help me work up the courage to go and tell some of the people in my support system that I’m feeling lonely and overwhelmed and could use some company, if not some help. I don’t seem to be very good at that. (Does this count?)
Anyway – we talked about some other strategies for summer, for respite, for behavior, etc. We talked about bringing him back to their social skills group. (Which I’m very pleased to have found works well this summer.) We played with the piggies and Patrick tried to trade our bird Max for one. And then we made some return appointments.
That was the happy appointment of the week. The next day, I took Patrick to his allergist and I’m afraid it didn’t go as smoothly.
I learned two important lessons. 1) Don’t schedule appointments immediately following school. Patrick needs time to unwind first. 2) Don’t go to the allergist alone.
Because of his ADHD and sensory processing disorder, Patrick doesn’t do well in new environments and Patrick’s allergist just moved to a big, beautiful new facility. I’m very excited about this because he’s no longer sharing space with a regular healthcare clinic and there’s less risk of catching a virus there. But for Patrick, new spaces have to be explored thoroughly with doors banged, containers emptied, equipment disassembled. It’s a disaster. Also, because of a lifetime of doctor’s visits, Patrick doesn’t like it when I talk to a doctor about him and will do just about anything to get me to stop.
This day was particularly bad. I’d managed to get a tired Patrick to nap the day before, but insomnia kicked in that night and he was up till 12, getting just 6 hours of sleep.
The end result is that Patrick threw all of the flashcards, snacks, magazines, and tissues on the floor. Then ended up having to sit in a chair with all other furniture moved away from him. And then he screamed for most of the rest of the appointment.
I have to give props to Patrick’s allergist, Dr. Gleich. He still smiles, talks to Patrick like Donald Duck, tells me that I have my hands full but am doing a good job being patient, and just gets us through the appointment as productively as possible. He is a very good man.
So while I tried to keep as much calm as possible, Patrick’s allergist and I tried to talk through how transplant might change the strategy for his allergies. Obviously, the ability and need to eat are a significant step. And I wanted to talk about how to safely explore what he can have.. and just how safe it is to be dabbling in some of Patrick’s milder allergies while he is on immune suppressants that are making it so he doesn’t have many reactions.
I wish Patrick had been feeling better so we could have covered more ground. We reviewed Patrick’s last test results. The gist of them is that Patrick’s test results show him allergic to a lot of foods that he tolerates, at least to some degree. We still need to stay far away from cashews, pistachios, peanuts, and unbaked eggs with caution for other foods we’ve seen cause a reaction. He said to keep encouraging Patrick to eat eggs as an ingredient in baked foods as that mild exposure is believed to help kids outgrow allergies. He gave blessing to my efforts in allowing Patrick traces of milk, in extreme moderation. (Goldfish crackers, for example.) He actually was surprised that I was still being cautious about butter and regular cheese, but I pointed out that we see reactions to those foods.
He also took care to warn me of just how serious it is that Patrick’s spleen was removed, leaving him without a major defense against illness. He wanted me to be sure that, for any fever, I know I need to go straight to Primary Children’s. Some things don’t change.
And then, because we weren’t getting much further with Patrick screaming in the corner, we decided to not try additional testing that day. Instead, he asked me to bring Patrick back in July or August for repeat blood and scratch testing. In the meantime, we are supposed to explore and even push a little bit, with epi pen and benadryl nearby, and keep a log of what we discover about Patrick’s tolerances for certain foods.
I find that the further we get down this road the more obscure my question are. Neither Patrick’s allergist nor his transplant team really know how food allergies and immune suppression will affect each other. I don’t want to compromise Patrick’s new gut with a lot of foods he’s allergic to. (Food allergies can cause a sort of rashlike reaction and ulcers in the intestine). But I also don’t want to limit his nutrition and ability to wean off of tube feeds if that’s not necessary. I find myself wishing that I knew of an allergist somewhere who has an interest in transplant and immune suppression. I’m not sure such a person even exists.
Anyway – Patrick was asleep in the car 5 minutes after we left the appointment. Next time, I’ll try to allow time for a rest after school. Next time I’ll try not to go alone.
And maybe over the next couple of months we can figure out a schedule that lets Patrick outgrow naps, like he’s trying to do, without spending afternoons and evenings too tired and grumpy to function.
One other appointment this week, feeding therapy. Inspired by Patrick’s interest at a memorial day barbecue, I decided to work on hot dogs this week. I’m pleased to report success. So long as you cut the hot dog in half so he can fit it in his mouth. And watch him and remind him to take small bites. And maybe let him decide he’s done with the bun. Still, a victory in time for summer for a kid who doesn’t like his burgers grilled.
And speaking of burgers, I’m trying to figure out how to translate Patrick’s love of certain fast foods into a working menu at home. I’ve got him eating ham on english muffins a-la Burger King breakfast sandwich. And we’re working on thin sliced roast beef on hamburger buns as a tribute to Arby’s.
I do have one lingering worry. I’ve realized that if they do decide that Patrick can continue on to first grade next year, that means eating lunch at school. And right now, I mostly have taught him to eat warm foods. He does great with fast food, mac and vegan-cheese, pasta in red sauce, hot dogs, cooked veggies, soups, chicken nuggets and french fries. And this is exactly the sort of food that will be being served in the cafeteria. Except, well, that an elementary school cafeteria is not an allergy-safe place. I can’t expect them to watch for cross-contamination.
So I’ll be packing lunches. But I think one of the conversations we need to have in this week’s school planning meeting is whether or it’s an option to heat up food for Patrick in a staff microwave. (It’s already non-negotiable for me that he’ll need an adult to sit with him in the cafeteria.)
And Patrick’s feeding therapist and I did some brainstorming on cold foods that he might be able to eat if we work with him over the summer.
I’ve decided that we will for sure be frequenting the lunch park at the school next door again this summer. But this time, with the hope and goal of being able to figure out lunches that will work to send with Patrick to school next year. Last year, I was able to follow their menu and pack matching foods 80% of the time. But if those things can’t be warmed up at the school, then we may just have to work on being ok with eating the food you had packed for you, even when it isn’t the same as everyone else’s.
One other item of note from this last week. A family moved in across the street from us while we were in Nebraska. They have a little boy Patrick’s same age. We’ve talked about but not found a way to get them together to play. Until this week.. when this boy came and asked if Patrick could play.
This was a growing experience for this mom. I am trying VERY hard to stop being a helicopter parent now that Patrick doesn’t have IV’s to monitor. But it meant that both of us were a bit thrown by a same-age playmate. I’m not sure Patrick knew quite what to do with him. In many ways, he is like his peers. But in many ways, he still has a lot of growing to do. They drew on the sidewalk with chalk a bit, tried out all of Patrick’s ride-on toys. Then they went across the street and played in his yard, too.
I was doing my best to stay looking busy but also keep an eye on them. And to let Patrick build this relationship on his own without my coaching. Mostly they drove Patrick’s ride-on car up and down the street.
When I picked Patrick up for dinner, he was enjoying a snack of animal cracker. I was grateful they were safe, and I decided that next time I send him to play I need to make sure they know he has allergies.
It’s been a full week. I sometimes think my head might explode trying to hold all of this and have a normal life, too.
Today was Patrick’s last day of kindergarten. It was over almost as soon as it began. I think it finally sunk into him this morning what I was saying because he was very worried as he got ready. Worried about missing his friends and worried about there not even being familiar teachers in summer school. To help with a little closure, I did a quick google search and found some printable thank you notes he could color for his teacher and aide. And then we were off.
I don’t know much about his day, except that he came out laden with gifts. His special education teacher came out with him at the end, too, which I thought was very thoughtful of her. He was given the “jolly rancher” award for always being so happy. And we had to linger a little bit at the park by the school to let him finish a popsicle he’d been given. Then, we met Brian downtown where we went out to lunch to celebrate the occasion.
It hardly seems real, except that getting Patrick needs several bags of supplies and safe snacks for school and all of that is in my kitchen now.
The last day of kindergarten represents the kickoff of a very big transition week for us. In less than a week, Patrick will have his broviac line removed. I am counting down the end of a week’s worth of those supplies in amazement and a bit of fear.
I’ve had some horrible dreams this week. I dreamed that Brian was on TPN, only it wasn’t available and his blood sugar was crashing. I dreamed I had a line that needed changed to a port and I felt so helpless and out of control trying to convince the nurses in the hospital to follow the pre-op directions I’d been given about my medications. It made me realize just how Patrick must feel, which was kind of crushing. Then I dreamed that Patrick was in surgery for his line but 5 hours had passed. That is really REALLY bad for that kind of procedure and brought back some horrible memories. Have I mentioned that it’s common for patients and caregivers dealing with this chronic illness, especially transplant, to suffer from a form of PTSD?
I’m just trying to push forward and take care of what needs to be done to get ready for what’s coming in the next couple of weeks. It is hard to keep them in the right order when new things keep needing my attention.
For example, yesterday I dropped Patrick off at school and ran to Walmart. The goal was to pick up a fruit for dinner and some entertainment for the plane ride to Nebraska. But as I headed to the checkout, my cell phone rang. It was the district nurse calling to give me a heads up that a group of district nurses had met to review the medical needs of students for the upcoming school year. And they had determined that Patrick no longer requires full-time nursing at school.
This is great news. He’ll still have an aide to help him with his many needs during the day. But it’s kind of bad news, too. It means that he no longer has to attend the medical hub school that he’s attending. And they wanted me to tell them where I want him to attend next year.
That’s not exactly a simple question. The school next to our house is quite small and not really given a lot of resources. Sending Patrick there would be very complicated and require bringing in a small army of people to work with him. I think we’ll be asking for an exception to be granted and for him to be able to continue at Whittier, at least for one more year.
It also means that I need to add making a list of care that an aide needs to be able to provide to Patrick, independent of a nurse. By Wednesday, when we’ll meet to also work on revising his IEP to get him through till the next IEP meeting.
In addition to that, Monday Patrick and I will meet with Patrick’s favorite Child Life specialist to help to teach him about having a port. On Tuesday, he’ll have his end of year kindergarten assessment. I’ve got to get orders for supplies for Patrick’s port ordered and delivered before we leave, and prescription refills ordered before we leave.
And in the midst of all of this, our church responsibilities have us pretty busy this weekend. Especially for Brian.
This is just the beginning for this summer and I’m having a hard time wrapping my mind around all of it.
But at least one thing is under our belt. Patrick’s a kindergarten alum. Now if we can just get him caught up a bit over the summer and make the right school plans for next year.
I’m also coming to the realization that summer is coming and that, in the past, I’ve been an amazing mom in the summer with lots of plans for fun and education. I am nowhere near that prepared this year. I am just trying to get through the next couple of weeks. But my mind is starting to hatch some plans and I hope I can make some of our traditional summer magic.