Being the 1% in a pandemic

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.

6 months

It is amazing to me to consider how far Patrick has come in the past 6 months. How much our lives have been changed in the last 6 months.

We decided to celebrate Patrick’s transplantiversary and half-birthday in grand fashion. After all, a transplant is an awesome birthday gift but a really sucky birthday party. Patrick deserved a party.

Right before transplant, Brian won a weekend getaway at a work party. So we finally redeemed that trip this weekend. Brian took Thursday and Friday off of work and we drove up to Bear Lake. Patrick was excited about the trip but very confused that our vacation didn’t include a plane. Let’s face it, we often fly off somewhere and THEN drive 3 hours or more once we get there. So a 3 hour drive, while that was a pretty big trip for me at his age, was a pretty small thing for him.

I still can’t get used to packing without TPN. I was able to pack all we needed with each of us only needing a small carry-on bag. I did, however, have two big bags of food that I took with us. Because Patrick is a hungry little monster and having food always available is kind of important. We knew that it was off-season in Bear Lake and we weren’t sure what food options we’d find for him. And besides, it was fun to have lots of snacks.

Patrick doesn't believe in sleeping in the car. But sometimes, he just can't help himself.
Patrick doesn’t believe in sleeping in the car. But sometimes, he just can’t help himself.

The trip was a much-needed dose of rest and family fun. We drove up Thursday afternoon and arrived in the early evening. They were still working on cleaning our room when we got there, so we opted to go for a drive. We ended up in Montpelier, ID for dinner at a little pizza joint. They were kind enough to make Patrick a little cheeseless personal pizza.

I love seeing finished plates that look almost like what other kids leave behind.
I love seeing finished plates that look almost like what other kids leave behind.

It always takes time to get Patrick settled in a new place. Hotel rooms are especially problematic. But we did succeed in finally getting him settled down. We stayed in the family suite so we could have a bathtub and a fridge. That meant, however, that instead of a bunkbed, Patrick had a fold-out couch. Have I mentioned Patrick won’t fall asleep away from home without me? Yeah, my back was pretty sore come morning. Getting too old for fold-out couches.

The next morning, Brian had planned a big surprise for Patrick. After a pancake breakfast, we went to a vacation rental shop and picked up a 4-seater ATV. Patrick has been jokingly asking me if we could drive our car up the side of a mountain for a while now. I think he was surprised to find out that it was actually possible. My thrill-seeking, rough-and-tumble, car-loving boy could barely wipe the smile off his face. He laughed his head off through all of the roughest parts of the path. Finally, we ended up off-roading in some snow and decided we were all tired. So we headed back down, stopped in a meadow for a snack, and then Patrick voted it was time to be done with the mountain.

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We ended up stopping and letting him just play with the vehicle for a while before returning it. And then, because we had time and because the vehicle was muddy, ended up driving it over to a car wash.

Patrick is a big Bob the Builder fan right now. So he was really excited to find himself up in rural country where there were also lots of construction vehicles. We had a great time spotting the real versions of diggers and cranes and dump trucks.

He was a little less enthused about visiting the lake. I didn’t think to bring him a camera along. (I need to remember he wants to be a photographer). And he wanted his dad’s. Eventually, though, we showed him the fun of throwing rocks in the lake and then he was sold.

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Inbetween outings, we hung out in our hotel room. Amazingly, after the first night, Patrick settled down and was happy to be there so we got the chance to watch a movie together while he played. We also explored a couple of local cafes and I was really proud of Patrick for trying food everywhere we ate. I was also very impressed that they restaurants were all so willing to help us invent Patrick-friendly foods from the items on their menus.

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And then, Saturday morning, when Patrick got up he told me that he loved our hotel and didn’t want to go home.

But we had to go home anyway. And, as with any vacation, once we made it home we were all just happy to be here.

Saturday evening, we let Patrick pick his birthday dinner. He threw me a loop by asking for chicken soup and grilled cheese. (With an egg allergy, we can’t just open a can for this.) Thank goodness Daddy was up for the job.

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And after dinner, we had birthday cupcakes. We sang Patrick happy unbirthday and he blew out his candle before I could explain making a wish.

Enough wishes have been granted this year for our family anyway. 6 years. And 6 months.

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2 years old

It’s amazing to think that my baby is 2 years old! He has grown so much in this past year! And it is such a miracle to still have him here with us.

We had a great time celebrating his birthday. Since it fell on a Sunday, we spent the morning at church. We dressed him up in a new little sport coat. They sang to him in his Primary class and he got to go get a treat from the bishop.

After church and naps, it was time to get ready for the party. Since Sunday dinner is a tradition for both sides of the family, we decided to invite all of them to dinner together.  I worked all the week before shopping and preparing food… ironic for a child who doesn’t eat. We did our best to pick foods he could share, though… and that wouldn’t take the party too long to eat so Patrick wouldn’t have to wait for them.

Patrick’s birthday dinner was simple, but his favorites. We bought him a personal sized bag of Baked Lays potato chips and a little cup with a bendy straw that we filled with water. Patrick LOVES eating chips out of the bag, so having his own was the perfect birthday treat and he had fun getting them EVERYWHERE around him.

After dinner, we gathered to sing Happy Birthday and blow out candles. Because Patrick can’t have milk, eggs, or sugar, I decided to make a non-food cake this year. I painted a round box and decorated it like a cake with cars everywhere, one of Patrick’s favorite things right now.

The street signs all had birthday messages on them. After blowing out the candle, we opened the cake instead of cutting it. It was filled with toy cars for all the kids to share.

Then we opened presents. Patrick made off like a bandit with about 20 small toy cars and a few big ones, shape sorters, balls, toy instruments and tools, books, puzzles, pop-up-pals and more.

Brian and I gave him our big present the day before so he could take it trick or treating… his very own Radio Flyer wagon. He wanted to help build it, so I gave him his toy hammer and soon he and daddy were both banging away.

It took me most of a day to clean up and make room for it all, but he plays with all the new toys almost every day… getting them out himself. He couldn’t be happier!

And the wagon – oh the wagon – has taught him a new independence. I can put his backpack in the wagon and he will push it around the yard all by himself for an hour or more. Just try to end this game before he’s tired and he’ll cry inconsolably.

Many thanks to those who helped to make Patrick’s birthday party a success. Those who helped cook, host, setup or cleanup. Those who made extra effort to come. And those far away who couldn’t come, but sent presents.

We all know what an absolute miracle this 2nd birthday is! Thank you for sharing with us in celebrating a momentous day!

Happy 2nd Birthday Patrick

Not many people get sentimental around Halloween. In our house, we just can’t help it.

2 years ago at 3:07 a.m. Eastern Standard Time, Patrick made his way into this world with much excitement. Doctors swept him out of the delivery room and into the operating room. The prognosis for him was grim. At first hours or days, then no more than 1 or 2 years.

That’s what we were told a few days later when we first heard about Patrick. Infections or liver failure would take his life within the first couple of years ago.

We were scared to hear that news and not sure what the future would hold. But there was something special about that beautiful little boy with the angel eyes and we loved him more each time we told his story and looked at his picture.

Last year, when we celebrated Patrick’s first birthday it was a big event. We almost lost him that year and his mere presence at home with us that day was a cause for celebration.

This year, not only is Patrick still healthy and still home, but he is amazing us as he grows bigger and stronger with each passing day. I didn’t imagine when we met Patrick that he’d be the vibrant little boy that his is now at age 2. On his first birthday, we had even more reason to wonder whether we’d ever see that day.

Patrick is walking. Not all of the time, but often and with more confidence in every step. He is learns more words all the time and loves having you teach him words for the toys he finds of the books you’re looking at. He loves the people he loves with an enthusiasm that’s hard to describe. He loves cars and Elmo and pushing his brand new birthday gift wagon. He kisses us goodnight every night and gives me hugs and kisses every morning. He adores his Daddy. He gets into trouble with his friends in music group. He likes chips and french fries and drinking from a straw.

He’s an amazing little boy whose love of life is contagious.

Happy Birthday Patrick. May this be one of many, many more!

Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.

Adoption Reflections: The best gift

Today is my birthday. Brian’s been asking me for weeks what I want for my birthday. The problem is, last year I got one of the best birthday gifts that I could have ever wished for. And this year… well, I can’t think of much more I’d wish for.

Last year my birthday was a pretty quiet event. My mom had flown home to Utah after a great week together. (She was good enough to blog about this.) I’d picked Brian up at the airport the day before. Patrick was recovering from surgery and was pretty out of it.

My mom had told a few of our favorite nurses that it was going to be my birthday.. so I was greeted with birthday wishes when we arrived at the hospital in the morning. Patrick was just waking up. For a kid who’d just had surgery, he looked great!

But that wasn’t the biggest event of the day. See, in Michigan, the birth parents have to go to court to relinquish custody. We’d been told that this process could take weeks, if not months. Until then, although we had rights, so did the birthparents – and in a hospital situation, with privacy laws and medical consent to worry about, the result was some awkward situations for us as adoptive parents.

The lawyer at the adoption agency had made some heroic efforts and gotten a court date just over a week from the time we signed our adoption paperwork. That morning, Patrick’s birth mom and dad went to court.

We met them for lunch shortly afterwards. I’ll never forget the image of Patrick’s birthfather comforting his birthmother as we walked into the restaurant. We had a nice lunch and got to know each other a bit better. This was the first chance we’d had to meet Patrick’s birth father. I tried to remember it all so I could tell Patrick about them someday.

Then we went back to the hospital. One of the best parts of time in the NICU with Patrick was naptime. He was in a very nice room with a comfy recliner. We could sit for hours in that chair with him snuggled up. With this sweet little ball of baby on my chest, the lights dimmed, and music playing in the background, it was impossible not to fall asleep sometimes. We called them “Patrick naps”. They were the highlight of my day. So after lunch, Brian and I each took a turn with a Patrick nap.

That night, we splurged a bit and went out to Benihana for dinner. My birthday cake was this funny little ice cream roll with a pink paper umbrella stuck in it.

This birthday didn’t have wrapping paper or candles. No one sang “Happy Birthday”. I didn’t have a party until weeks later. I didn’t get any cards. I didn’t even see most of my friends or family.

I didn’t open any gifts on my birthday. But I did get the best gift of all. Patrick was officially ours. I was officially a mom.. and best of all, it happened on the day I’d set as my arbitrary deadline. I didn’t want to turn 29 without being a mom.

Patrick’s life has been one of the best gifts I’ve ever received. He has healed sorrows I didn’t think could be healed. He has taught me patience and courage and love.

So please forgive me if this year I’m not very worried about present or parties or cakes. This morning Patrick grabbed my hair and pulled my face down to his and give me a big wet sloppy kiss right on the mouth. That is gift enough.

Patrick’s 1st Birthday Party

Patrick had SUCH a good birthday! He could tell from the party preparations the night before that something good was going on. He watched me decorate his birthday cake… and then was too happy and excited to go to sleep.

He did, though, finally, and when he got up in the morning, he was again just HAPPY! It’s like he knew this was a big day.

Because Patrick’s birthday is on Halloween, we dressed up and invited guests to do the same. We chose a circus theme for the party. Patrick was dressed as a monkey. Brian was the ringmaster. I was a clown.

We spent the morning finishing things up for the party. He thought watching me hang streamers was great fun! (I used red and white streamers to create the feel of a circus tent in our living room.) About 1 we changed into costumes.. he loved my clown wig and played with it for most of the rest of the day.

Slowly the guests arrived. Because Brian and I have brothers, sisters and parents nearby, we knew there would be a lot of grown-ups… so we made all the circus activities self-serve. The adults helped the kids paint their faces and learned to make balloon animals for them. We had popcorn and animal crackers and caramel apples.

Of course, most everyone came in costume. Some carried on the circus theme… My dad came as a lion tamer, with my mom dressed as his lion. My brother was a magician.

Some of the friends and family who dressed up

Once everyone arrived, we sang Happy Birthday and Brian blew out Patrick’s candle. (Patrick was too confused about why everyone was singing and just kept watching me to see if it was OK.)

He’s not allowed sugar, so he couldn’t have cake, but he was given permission this week to have cheetos and hulless popcorn, so that’s what he munched on instead.

Daddy’s better than any boring old snack.

Then we opened presents. He got lots of new toys and some new clothes. He loved them all, but I think his favorite thing about the party was not the gifts, but the fact that all the people he loved best were there.

Patrick & “Papa”, Brian’s dad

Patrick and Grandpa, Emily’s Dad

The party wrapped up around 6. All the kids went home with hands full of balloons, balloon animals, caramel apples, and cracker jacks with faces all painted. I think everyone had a really good time!

That put us just on time for trick-or-treaters. Patrick didn’t go trick-or-treating this year… he’s too little and not allowed candy anyway. At first he liked seeing all the people who came to the door. Eventually he got tired and not too happy when people would ring the doorbell. Eventually I sat him on my lap and we read books until we were sure he was good and tired. Then, we turned off the porch light and put him in bed. He was exhausted, and so were we.We all crashed for the night.

The bestest birthday present ever

This year, my ultimate birthday wish came true. On Tuesday we were given custody official legal custody of Patrick. This was done in what was pretty near record time for the state of Michigan. Now we only have a couple of hurdles left before we can bring him home.

If you haven’t heard the sorry, we were contacted on November 5th by our caseworker and told about a little boy who’d been born the week before in Michigan. The details of his medical condition were pretty sketchy, but in essence, we knew that he had to be fed through an IV and that his chances of living past age 2 were pretty slim.

Our gut reaction was grief, mourning for the loss of what we’d expected in becoming parents. But, at the same time, we’ve always felt that adoption is a faith process and we at least owed this opportunity some serious thought and prayer.

Brian came home from work and we said and prayer and went to the temple. And – decided that we should keep learning more. The next day we got some additional information from our caseworker and sent a copy of our adoption profile to Michigan. We really didn’t expect to hear much more and did not expect at all to be chosen.

But – the next day, as I met Brian at his office for flu shots, the phone rang and our caseworker told us that Patrick’s birthparents had chosen us. (I didn’t care so much anymore if it might hurt to get a flu shot). We quickly got in touch with caseworkers and the hospital in Michigan to learn more. We decided that the best way to assess the situation was to fly to Michigan where we could see things first hand.

We arrived in Detroit Saturday evening and, after cleaning up a bit at the hotel, went to the hospital. We were met there by a bit of drama between the birthparents… and were not met by the caseworker here. We were introduced to the birthmother and her family, and then to Patrick. We learned that Patrick was born with a defect called short gut, meaning that most of his bowel is missing. Because of this, he’ll need a bowel transplant to survive. But – he is so small that he can’t have a transplant until he at least doubles in size… and his chances of surviving infection and liver damage that long are pretty slim.

We went back to our hotel room completely overwhelmed and quite ready to just go home. But – we’d promised ourselves that we’d spend a day with him, and so Sunday that’s what we did. We spent a day holding him and learning what kind of care he needs. One thing to know about Patrick is that, unless you know something’s wrong, only the tubes attached to him would give away his condition. In every other way, he is a happy, healthy little baby boy. And by the end of Sunday, he’d pretty much wrapped me around his finger.When I got back to the hotel I started copying pictures from our digital camera. When I came across the picture at the top of this post, my heart just kind of sang. I knew that I’d fallen in love with this little guy.

There were still a lot of questions to be resolved, though. We didn’t even know if the hospital in Utah would be able to care for him. So we spent Monday morning talking to doctors, nurses, insurance, and social workers.

Brian had to fly back to run a conference in Utah that same day. His flight left at 1. And we had to make a decision the same day. We really didn’t know exactly how things would work out… but we couldn’t leave Patrick anymore, and so we called the caseworker and signed the documents to begin the adoption process.

Michigan requires that the birthparents appear in court and be questioned to ensure that they made the choice to place a child for adoption of their own free will… so we had a tense few days as the agency prepared paperwork and worked to get an early court date. Fortunately, Howie had plenty to keep him busy at home and my mom was able to come spend the week with me here so that we didn’t have to face that anxious time alone.

And – finally – just two days ago on my birthday, the court placed Patrick in our custody.Now we’re praying for smooth sailing as the interstate compact is worked out and, even more importantly, as we try to figure out how to get Patrick home. The price tag on an air ambulance to Utah is $30,000. The care manager at the hospital is trying to persuade the insurance company to pick up the tab for most of that, but they (understandably) aren’t sure that they want to do it.

So, we keep praying and working, and most importantly, enjoying our new little son. The best part of any day for me is being able to sit with him snuggled up to my chest… especially now that Howie’s back to share the moment with me.

It’s too hard to keep up with all of our loved ones by telephone, so we’re going to do our best to keep you in the loop through this blog. Thank you all for the love and prayers and support on our behalf thus far.