How to Make a Wish, Part 2

Sep 25, 2021

(I had a lot to share about Aaron's Make-a-Wish experience, so I broke it down into several posts. Click here for Part 1.)

At first, Aaron had very little interest in talking, or even thinking, about a different wish (I mean, can you blame him?). I talked to several people at Make-A-Wish to see if his wish could simply be put on hold. I told them Aaron was fine with waiting until it was safe to travel again. Although everyone was very sympathetic, they wouldn't (couldn't) compromise. 

For one thing, Make-A-Wish is a nonprofit organization. For tax reasons, they have to fulfill a certain number of wishes every month. They couldn't have a backlog of kids waiting for wishes. They had to keep the cycle going.

For another, they had a rule that a wish could not sit around waiting for more than a year after the process started. Although many wish kids have chronic conditions, others have illnesses that, although critical, can eventually be cured. Aaron fell into the second category. If too much time passes, then these kids have the potential of going back to their normal, healthy selves and no longer qualify for a wish. They said that Aaron was at risk of this happening if he waited too long to declare his wish. (As it turned out, Aaron was about to extend his time by needing a second transplant, but we didn't know that then. And it wouldn't have changed anything in terms of being able to keep his travel wish anyway.)

So Mike and I sat down with Aaron and brainstormed some new ideas. And we came up with three good ones:

  • It is a well-known fact that Aaron loves Lego, so he thought it would be fun to turn the toy room into a Lego builder's paradise: large workspace, cool decorations, easy organization, lights, and, of course, more Lego. (Think LegoMasters, but on a smaller scale.)
  • The family room was another area of the house he thought could use a revamp. He had the idea of creating the ultimate gaming room: video game console, sound system, new TV, entertainment center, comfortable seating. etc.
  • His third idea was to turn the balcony into a fun hangout space. We basically hadn't touched it since we moved into our house. He thought it would be fun to add stairs so it would be accessible from the outside, add furniture and a snack bar, put up lighting, and hang a TV for outdoor movies. 

Megan and Maddie came over to our house to see all of the potential spaces and talk through various options. Each idea came with complications: there were things Make-A-Wish could do but other things they couldn't. For example, they weren't allowed to do any type of construction. They also would need a lot of guidance and vision to bring about any of the options, and making decisions is one thing Aaron does not like.

As we talked, the "magic" started to fade. Just like any organization, Make-A-Wish is governed by rules and protocols. So even though they want their wish kids to dream big, there is only so much they can do. 

When Aaron wished to go to New Zealand, the magic was there. They said "YES!" and took the entire planning process from there. It was out of our hands. They would work out tickets, accommodations, activities. All we had to do was show up.

I expected it to be the same with other types of wishes, and probably that is the case if you want to meet someone famous or there's a single large item you want (like a pop-up camper). But a room makeover requires a lot of logistics, and as we went through them, each idea was met with, "Well, we could do this part of it, but not that . . . " It felt like real life.

Before they left, the wish granters tentatively suggested that Aaron might want to wish for a shopping spree instead. Most of his ideas included a bunch of items: large desk or table for the Lego room, sound system for the game room, furniture for the balcony. Why not just get the things he wanted and create one of the rooms himself?

I was initially opposed to a shopping spree. It just seemed so materialistic: I wish for a bunch of money to go out and buy whatever I want. It didn't feel creative or special. It was just going to be a pile of stuff . . . Christmas on steroids.

But as we talked to Aaron about the various options, he came to the conclusion that this was, in fact, the best choice. The other wishes couldn't be completely fulfilled; a shopping spree could. Plus, as Aaron started talking about some of the things he had always wanted but would always be too expensive (the Lego Millennium Falcon came immediately to mind), I could see that the thought of getting to buy whatever he wanted actually was magical for a 13-year-old. As Mike was quick to point out, "As everyone knows, if a genie has to grant you a wish, you always wish for more wishes." That's essentially what the shopping spree felt like.

Aaron called Megan and told her he was officially changing his wish to a shopping spree. He was genuinely very happy about it.

It was around this same time that the sporting goods store, Scheels, first became involved. Many companies reach out to Make-A-Wish to sponsor a wish kid or host an event or participate in a wish in some way. When Scheels did that, Make-A-Wish paired Aaron with them.

At first, Scheels was going to throw the proclamation event for Aaron. This is where the wish kid finds out that his wish has been approved and is officially on the docket to be granted. These proclamation events are typically fun parties with lots of family and friends attending.

Aaron's proclamation party was scheduled for mid-November 2020. However, the date happened to fall right when the governor issued a stay-at-home order to try to curb the pandemic. All non-essential get-togethers, parties, and events had to be cancelled. So Aaron's proclamation party was postponed until further notice.

The holidays were fast approaching, which is, understandably, a very busy time of year for a big retailer like Scheels. So the event was put on hold until after the new year.

And you know what happened at the beginning of 2021:

Aaron's bone marrow crashed, he was back in the hospital on a regular basis, and he needed lots of transfusions. The wish was the furthest thing from our minds as we went back into full-on survival mode. (Interestingly, he relapsed during the very time period when we were originally supposed to be in New Zealand, leading me to think that maybe the cancelled wish was a tender mercy after all.)

Knowing that a party at Scheels was going to be impossible, Megan and Maddie took the proclamation into their own hands. One evening, they showed up in aprons and chef's hats with a huge pizza from The Pie and a smaller "pizza" made of money. This was accompanied by a note that said he would soon be receiving some "dough" for a shopping spree. They did such a good job of keeping the excitement alive, even as the months dragged on.

Because of Aaron's need for a second transplant, Aaron's wish got pushed back to May, then June, then July. Scheel's still wanted to be involved, but they switched to planning the wish presentation instead of the proclamation. We just had to make sure that Aaron was healthy and stable enough to be able to go.

I was so grateful that Scheel's was willing to wait for Aaron. I knew from the start that Scheel's would be a great pairing for Aaron, and I didn't want him to miss out on the opportunity. At the same time, we couldn't rush into it. Aaron's health had to come first. (Luckily, everyone at Make-A-Wish is very cognizant of the vulnerability of the kids they're dealing with, so they were very patient with the process, and fortunately for us, so was Scheel's.)

As I was in communication with Aaron's wish granters and other people at Make-A-Wish to pin down a date for the fulfillment of his wish, Megan realized that the month we were planning for (July) was the same month as Aaron's thirteenth birthday. It turned out that thirteen was a big deal because it would bump Aaron up into a higher bracket in terms of the shopping spree budget. If the wish was fulfilled in July, he would be in the lower bracket (his birthday was at the end of the month); if he waited until August, he would be in the higher bracket. We had no idea that there were different allotments depending on the age of the child. With just a few weeks separating one amount from the other, everyone at Make-A-Wish highly encouraged him to wait.

So it was set for August, and Aaron was eagerly anticipating it through the whole summer. 

But then, he was thrown one more curveball: Make-A-Wish called and offered him back his travel wish.

With Covid-19 somewhat more stable (at least at that time), they had opened up travel wishes within the United States. Aaron still couldn't go to New Zealand, but he could go anywhere in the US. 

Even though it wasn't his original wish, it was very tempting. He loves traveling and has missed it so much during these months being cooped up at home. Even with boundaries on where he could go, the possibilities still felt endless--Hawaii, Alaska, Florida, New York--and each place offered an array of attractions, depending on what he was in the mood for.

He agonized over this decision for several weeks. And when I say "agonized," I really do mean agonized. I couldn't even bring it up without him crying or shutting down. We made a list of pros and cons with both wishes, but neither produced a clear answer. He was sure that whichever wish he picked, he would regret not choosing the other one. The wish process had already been full of so many decisions, and as nice as it was to have this as an option again, I think it would have been better for Aaron if he hadn't known about it. 

In the end, it was time that made the decision for him. He had already been waiting nearly two years for his wish. The shopping spree wish was literally going to be fulfilled the very next month. The travel wish, on the other hand, wasn't going to happen until next spring or summer. Things have been so up and down in the world and Aaron's own health that we could see the wish being pushed back again or switched back to a shopping spree wish. I think he was just feeling a bit tired of plans changing on him, and I couldn't blame him. I texted Megan and told her he had decided to stick with his shopping spree wish.

As so often happens after a decision has been made, Aaron felt extreme relief and happiness just to be moving forward again. He was fully on board with and excited for the shopping spree. Contrary to what he was worried about, he actually didn't have wish remorse about letting go of the trip. 

He was ready to start making the ultimate, most epic shopping list of his life . . .

How to Make a Wish, Part 1

Sep 19, 2021

I sat down to write a post about Aaron's experience with Make-A-Wish and quickly realized that if I wanted to tell the whole story, it would turn into a massive post. So rather than edit my long-windedness, I decided to just break it down into three parts. 

Shortly after Aaron was diagnosed with bone marrow failure in August 2019, his fifth grade teacher called me and asked if I'd be okay if she referred him to the Make-A-Wish program. She felt like dreaming, planning, and anticipating a wish could help Aaron cope with the long months of treatment and recovery.

So she filled out all of the necessary paperwork, and in October 2019, just a couple of weeks after Aaron was released from the hospital following his first transplant, he met his wish granters, Megan and Maddie, for the first time.

This was pre-Covid, so our family was able to go to the Make-a-Wish building to brainstorm ideas and get to know his wish granters. Aaron was severely immunocompromised at the time, so it was just our immediate family and the wish granters. The building was quiet and empty, and it felt really special.

Aaron had been thinking about his wish in the weeks leading up to this meeting, but the only thing he had settled on for sure was that he wanted a trip. His top choice was New Zealand, but I gently tried to discourage him from that since it was so far away and would require many hours of travel (and a lot of jet lag) that would take away from the actual fun of the trip.

Megan and Maddie asked Aaron a lot of questions about his interests, and we all had a chance to write down our own wishes for Aaron's future. When they asked for his top wish, he said the Caribbean. They wrote it down, put it in a little capsule, and then Aaron unlocked the door to the wishing room. The inside of the room felt magical, especially as Aaron placed his wish inside the chamber.

After that night, Aaron started doing a lot of research about the islands in the Caribbean. He checked out travel DVDs and books. He looked into going on a cruise versus spending the whole time on one island. 

And the more he researched, the less enthusiastic or excited he seemed to be. I realized it was because he didn't actually want to go to the Caribbean; he wanted to go to New Zealand. I sat down with him and said that this was his wish and that if that was New Zealand, then he shouldn't switch to something else. The travel and jet lag wouldn't matter. He would still get several days in a country on the other side of the world--a country that most people only ever dreamed of going to. It would be worth any hassle or discomfort it took to get there.

So he switched his wish to New Zealand. And the spark returned. Since we would be traveling outside of the country with seven people, Make-a-Wish asked Aaron to write a letter explaining why he wanted this trip. One part of his letter said, 

"Before I got sick, I was on the swim team. I would love to go snorkeling and see all of the marine life in New Zealand. My brothers and I love to play outside and go exploring, and I think that there would be a lot of cool hikes, beaches, forests, and caves in New Zealand." 

A couple of weeks later, we received the news that Aaron's wish had been approved by the board. They planned to host an official proclamation to tell Aaron his wish was being granted. The trip itself wouldn't be able to happen until January or February of 2021, but they wanted us to get passports for all of the family as soon as possible so that everything would be all set on our end. 

So on a Friday afternoon in February 2020, we all trooped over to the passport office for photos and applications. Mike was super prepared and had filled out everything ahead of time so we could streamline the process . . . but then they told us he'd used the wrong color of ink. It was getting close to the end of the day, so we scrambled to fill out all of the paperwork again. 

Then they told us that it was their policy not to take passport photos of children under five years old, and we'd have to go somewhere else for Ian's photo. We begged them to make an exception and then prayed that he'd hold still (he did). We left the office feeling immensely satisfied at having checked off one of the most essential things for international travel. 

We thought the hardest part was going to be waiting for the months to pass until Aaron was healthy enough to travel and it was his turn in the Make-a-Wish queue. But the very next month, the world came to a grinding halt with the fast spread of Covid-19. 

We assumed Aaron would still get to travel to New Zealand even though it might be delayed due to the virus. However, in July 2020, I received a call from the Make-a-Wish director: all wish travel was officially cancelled; Aaron would have to choose a different wish. 

(To be continued . . . )

A Little of This and That in August

Sep 12, 2021

August is not my favorite month of summer--usually because it feels like we get prematurely cut off by school (which was certainly the case this year). But there was plenty to do, and we spent our time in a variety of ways, namely . . . 

Participating . . . in a non-traditional water balloon fight. One of Mike's sisters dropped off 100 water balloons to celebrate Aaron reaching Day +100. The boys launched them at each other from the balcony down to the tramp. It made the balloons last longer and was more fun than just running around the yard. 

Learning . . . how to make cookies. One of Clark's summer goals was to learn how to bake cookies. As the summer drew to a close, I was feeling guilty that I hadn't yet helped him with this goal. And then I had the genius thought to let Max take charge of it, which turned out to be a much better plan. Max was so patient and kind and happily shared all of his years of baking wisdom and expertise. Clark felt proud and successful, and the results were delicious. 

Watching . . . shooting stars. On a clear night in the middle of the month, we drove away from the city lights so that we could have a clear view of the night sky. We went during one of the peak nights of the Perseid meteor shower, and we were not disappointed. All of us (except Ian) spotted multiple shooting stars. I saw a long and brilliant one streak across the horizon, and it was especially memorable. But even if we hadn't seen a single shooting star, the drive into the mountains would have still been worth it--the night sky was breathtaking. You forget how vast and magnificent it is when it is hidden by so many lights. It seemed like a truly perfect and magical evening . . . until the drive home. We got back onto the twisting mountain road, and after a few minutes, I heard some retching in the back. Ian, who is prone to motion sickness, had thrown up all over himself. Usually, he would have been aware of it enough to give us a warning, but it was so late that he was actually half asleep and didn't realize what was happening. That put a damper on things, but I was just grateful it had happened on the way home instead of the way there.

Saying . . . goodbye to his central line. Aaron's broviac was in heavy use from March to July, but he finally didn't need it anymore. The homecare nurse came over for one last dressing change the day before it was removed, which was probably unnecessary, but we wanted to say goodbye. I should have kept track of how many hours that line put in for Aaron. It would have been in the hundreds for sure, maybe even more. 

Holding . . . our breath due to intense smoke. One morning, we were outside doing yard work. It was a beautiful day, but a sudden wind came up, and as we looked out across the valley, we noticed smoke rolling in from California. Within forty-five minutes, it had reached us and entirely covered up our mountains. It was surreal and felt like some kind of apocalyptic event. The air quality was reported to be the worst in the world, and we didn't dare go outside. We continued to experience smoky air off and on throughout the rest of the month.

Soaking . . . up torrential rains. After months of severe drought, August delivered. Over the course of three days, our area received 2.8 inches. This amount of rain is unheard of around here. It just rained and rained--sometimes slowing to a drizzle, other times pouring buckets. Unfortunately, due to a clogged rain gutter, we did have some flooding at our rental house, but Mike was able to get everything suctioned and dried out. On the second day of rain, a lot of smoke came with it, which was the weirdest combination. We didn't get that nice, clean air scent, but instead felt stifled by the smell of smoke. But all in all, I think the rain did more good than harm, and you just can't beat the soothing sound of falling rain (one of my favorites!). 

Trying . . . out a few Olympic sports. While we were still heavily invested in the Olympics, Mike borrowed a shot put, javelin, and discus from a friend, and the boys tried throwing them. It was harder than it looked and definitely gave them an appreciation for the skills of trained athletes.

Losing . . . his first tooth. Just a few weeks ago, Clark said, "I wish I could have a loose tooth." I told him not to get his hopes up since most of our kids seem to have very slow tooth genes--slow to come in and slow to fall out. But then, not very long after that, he suddenly had one that was loose, and he couldn't have been more thrilled. He wiggled it obsessively, and within just a few hours, it was barely hanging on. Mike gave it a quick tug, and it was out. Clark told us that one of his friends has a tooth fairy named Fairy Ann Twinkle Toes, so he decided to write a note to ask the name of our tooth fairy. In our house, the tooth fairy plays a very minor roll. Money gets left under the boys' pillows (sometimes, if the tooth fairy remembers), but there isn't any show or fanfare whatsoever. But still, it seemed like his note deserved a response. The next morning, Clark found a dollar under his pillow along with a tooth shaped paper that said, "My name is Gurb." This name made me laugh so hard, I can't even tell you. I think it fits our forgetful, neglectful tooth fairy. 

Spending . . . a few days at the pool. Clark and Ian loved the pool more than the other boys this summer, so it was often just the three of us there. As the summer waned, so did the crowds, which was nice. Ian gained a lot of confidence in the water this year. He is quite a bit more timid than the other boys were at his age, so he always stayed close to the steps but he was usually without a floatie. 

Reclaiming . . . my knitting passion. Turns out all I had to do was go spend a couple hundred dollars at the yarn store, and it was back in full force. I don't have anything to show yet because my current projects are big and will take several weeks/months to finish, but I'm going strong again. 

Starting . . . school. The first day of school began early this year (August 16th), and none of us were ready for it, especially since we were trying to get things figured out with Aaron. Luckily, everything has worked out, and everyone has settled into the new routine (although Aaron (eighth grade) absolutely hates doing school virtually, so the sooner we can get him in-person, the better). Maxwell is in sixth grade and started junior high this year. He is not a fan of change, so it was a big leap for him, but I think he actually likes rotating through classes and teachers. Most of his closest friends are in his classes with him, so that helps, too. He has also become our little runner for Aaron and spends Friday afternoons dropping off all of Aaron's assignments to his teachers and picking up new ones for the coming week. Bradley (fourth grade) and Clark (second grade) had no reservations about going back to school; they love their teachers and especially like being back with their friends; I have been pleasantly surprised with the level of mask wearing at the elementary school. Both Bradley's and Clark's classes are about 95% masked. And then there's Ian . . . still waiting for preschool to start. I will never understand why preschool starts so much later--these are the kids who actually want to go to school, and then they have to wait for weeks. I felt so bad when the older kids all went to school and Ian asked, "How many days until I get to go to school," and I had to respond, ". . . twenty-five." That feels like an eternity to a four-year-old.

Singing . . . at music class. Luckily, while Ian was waiting around for preschool, his little music class started. I have always been in charge of my kids' musical education, and I usually start them on the piano when they're four or five years old. But a woman in our neighborhood has a Let's Play Music studio, and I decided to send Ian there for their three-year program. Not only does it provide an excellent musical foundation, but it's a fun social environment and instills an early love of music. Plus, as a piano teacher, I wanted to be somewhat familiar with the program so that when I have students start with me after they've gone through the program, I at least have a general idea of the skills and knowledge they already have. So I had two motives for having Ian do it. He has only been to two classes so far, but he already loves it. I think it's a great fit for him. 

Celebrating . . . the birthdays of Peck and Waddles. We don't have any August birthdays in our family . . . until Ian informed us about the birthdays of his beloved chicks, Peck and Waddles. We celebrated with a present (a small Lego set Ian was only too happy to help Waddles build) and chocolate cupcakes (made by Max). The next day, he told me it was his stuffed panda, Smithy's birthday, and I knew I had to put a halt to the festivities right then or we would never see an end.

Showing . . . The Glenn Miller Story to my kids. I love old classic movies, but I haven't done a very good job of introducing them to the boys. However, now that we have both a trombonist and clarinetist in the house (two instruments that feature heavily in this movie), I decided it was time for them to see this beloved favorite of mine. I had forgotten just how good it was (Jimmy Stewart and June Allyson are perfection), and my kids actually really liked it. At one point, I started to skip over one of the songs because it was getting late, and Aaron protested because he was enjoying the music so much: that Big Band sound, you know? Max got a little anxious at the end when he saw where the ending was headed (it doesn't matter how many times I see it--it's just so sad, every time), but all in all, it is such an enjoyable and inspiring story. 

Going . . . on a hike. We didn't go on any family hikes this summer, mostly because Aaron is not supposed to be around a lot of dust. But Ian and I finally went on a short one with my friend and her four-year-old and baby. Unfortunately, four-year-olds aren't known for their stamina, so it evolved into mostly playing on rocks, but Ian and George are the cutest little friends. 

Playing . . . soccer. We didn't play soccer at all last year, but I knew Clark was missing it, and when I had the chance to get him on a team with a couple of neighborhood friends, I jumped on it. He is so happy to be back to playing, and Mike's glad that, since only one of our kids is playing soccer, we only have to go to one game each Saturday instead of several. 

Running . . . cross country. Max signed up for cross country this fall. He didn't really want to, but there wasn't any other sport he was interested in, and I wanted him to do something active. I felt a little bad though when, a couple of days before it started, he asked, "So what exactly do you do in cross country?" He is not loving it and has been quick to assure us that he will never love it. Nevertheless, he has stuck with it and given his best and has actually already improved. So maybe he'll turn into a runner after all.

Eating . . . homemade ice cream. We got together with our neighbors for a homemade ice cream party. Mike made peach, and they made classic vanilla, and both were so good. Summer perfection. 

Ending . . . the month on a high note. After nearly two years, Aaron's Make-a-Wish was fulfilled. He wished for a shopping spree (after his wish to go to New Zealand was cancelled due to Covid). He decided on all of his items ahead of time, and then they were presented to him at Scheel's, who hosted the event. It was a super fun morning for our whole family, but it's too much to tell in one little paragraph, so I'll save the rest for its own blog post. 

And that's a wrap on another month. Despite the challenges of this year, 2021 is still flying by. 

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