I Will Rejoice in My God: A Collection of Tender Mercies

Yesterday I was able to sneak away for a few hours to go to the temple. I didn't really feel like I had the time for it. In fact, in the days since Aaron returned home, I have felt busier and more overwhelmed than at any other time during this process.

Having him back home has been so sweet and wonderful. Aaron has found joy in the simplest things: doing a puzzle with Clark, listening to Ian's little chatter (he told me, "At first, I had a hard time understanding Ian!"), eating lunch at the kitchen table with his siblings, riding his ripstick around the driveway, reading in his own bed, listening to Harry Potter . . . the list could go on and on. 

But being home has come with its own set of challenges and responsibilities. I will probably go into them more in a future post, but basically, at this point, I feel like all I am doing is following my kids around with a Clorox wipe, going over any surface they touch. And in spite of being diligent, Max, Mike, and Ian somehow managed to get sick this weekend, all with different things.

Yesterday I felt like I was going to break under the stress of it all. It felt like an impossible task, this job of keeping one person healthy in a sea of germs. 

When I feel that kind of pressure, I cry. A lot. 

And so I fled to the temple. It felt like a luxury to be able to run away since the last few weeks have tied Mike and me down to two different places, making it unfeasible for either of us to do anything extra. So I felt grateful that this was an option.

On the drive back home, I turned on the Tabernacle Choir in an attempt to hold onto the peace I'd been feeling. My mind drifted over the last few months. As I sat there in the quietly thrumming car, memories began resurfacing--evidence of God's hand in our lives.

I remembered the day after Aaron was diagnosed. We were in the Cancer, Blood, and Bone Marrow clinic. Aaron was getting a unit of platelets before going downstairs for a bone marrow biopsy. As we passed through the clinic's waiting room, I happened to glance at a young woman, and my brain instantly had a moment of recognition. She didn't just remind me of someone; I somehow knew her.

Down the elevator, through the hall, I kept thinking of her face, trying to figure out who she was. Then suddenly, I had it. She was my sister's first mission companion back in March. I had only seen her in photos, but still, I knew it was her. 

I assumed she had probably had cancer before her mission and was back for a checkup. But after asking my sister about it, I found out that it wasn't cancer. 

It was aplastic anemia. 

In the lonely isolation of a diagnosis we'd never heard of, I somehow saw (and recognized) a person I'd never actually met who had intimate experience with the same disease and had successfully conquered it. 

This is the kind of coincidence you can't make up.

In the weeks that followed, I texted and emailed and talked to both Gwen and her mom. They offered hope, shared insights, gave helpful tips, and basically made us feel like we weren't alone. A few days after Aaron's transplant, they visited him in the hospital, bearing BYU gifts and contagious optimism.

I think we would have made the connection with Gwen whether I had seen her in the waiting room that day or not. But the fact that I did see her, that was the tender mercy. 

Not long after I talked to Gwen, we met another family with aplastic anemia. I can't remember how the original contact was made (I think our social worker maybe gave our name to them because we had said we would love to talk to another family), but one morning Mike was with Aaron at the clinic getting more platelets, and the mom came and talked to them. Her son had just received a bone marrow transplant a few days before. At the time, we didn't even know if Aaron would qualify for a bone marrow transplant, but she was able to offer a unique, and very current, perspective.

When Mike told me he had talked to Amber, I was so disappointed that I hadn't been at the hospital too. At that point, I was craving information, and with a disease so rare, it was hard to come by. 

But somehow in the subsequent weeks, our paths have crossed more times than I can count. We pass each other at the exact moment we're coming and going from the hospital. Or I'm in the bathroom washing my hands, and I look up, and it's Amber who happens to be standing at the other sink. Or I walk into the hallway for all of five seconds, but it ends up being the same five seconds that Amber is there too. It has happened so often that there seems to be no other explanation for it except that it was divinely orchestrated.

For a person like me who loves face-to-face interactions a hundred times more than phone conversations, these chance meetings have been such a gift. Amber and Jaxon are just enough ahead of us in the process to be real mentors, and I am so grateful for their experience and wisdom.

Another tender mercy had nothing to do with people but nevertheless made a big impact on our mental health.

The first time Aaron was admitted to the hospital, his room looked out on the helicopter landing pad. There was one exciting moment when a helicopter flew in, but other than that, it was the most boring, most ugly and unchanging view ever. Luckily, we only had to look at it for two days. 

I worried about getting stuck with a view like that for our month-long stay. And so it was one of the first things I noticed when we walked into Room 4408. The view was perfect. We looked out onto the rolling hills (one of them had a big U emblazoned on it, but we managed to look past that) where the leaves gradually changed colors. We could see the entrance to the hospital, and we watched people come and go all day long. We had so many visitors, even nurses, come in and say, "You have such a great view!"

I don't know if they make any kind of effort to put long-term patients in rooms with good views, but it was something I was thankful for every day that we were there.

And speaking of visitors, Aaron had a steady stream of them while he was in the hospital. Before he was admitted, I had told family and friends that he would want visitors to help break up the long days. But beyond that, I didn't try to schedule or arrange anything.

So it was amazing to me that almost every day, Aaron had one or two visitors come. I almost never had to turn someone away because he had too many. Nor did I ever have to try to scrounge up people to come see him. I worried that we might have a barrage of people right at the beginning of his stay, or I thought the weekends might be easier for people and consequently fill up more than the other days.

But from the day he was admitted to the day he was discharged, we had just the right number of daily visitors. I couldn't have planned it better if I had tried.

One of my favorite chapters in The Book of Mormon is Alma 26. Ammon is praising the Lord for the many miracles and blessings he has witnessed. His brothers chastise him just a bit, telling him that he has gone too far in his rejoicing.

But Ammon says, "My joy is carried away, even unto boasting in my God; for he has all power, all wisdom, and all understanding . . . Now if this is boasting, even so will I boast . . . This is my joy, and my great thanksgiving; yea, and I will give thanks unto my God forever."

That is exactly how I feel. We have seen and experienced so many good things throughout this challenge. We have been blessed so abundantly. On the surface, these good things might look like mere coincidences. But underneath, I recognize the familiar mark of God's love. He is the Giver of all good things, and I attribute every good thing to His hand.

Like Ammon, I will rejoice and give thanks unto Him forever.

Cheerfully Do All Things

We are closing out Day -4.

A brief recap so far:

On Tuesday (Day -6), Aaron got his central line placed. He has an external line (a Broviac), which means the tubing hangs outside of his body. His surgery was scheduled for 2:00 in the afternoon, but they were running about two hours behind, so it was a long day of waiting (and hunger) for him.

On Wednesday (Day -5), Aaron had his first dose of chemo (cyclophosphamide, or cytoxan). It was undramatic. He built a Lego set and sucked on ice and when the infusion was nearly finished, he asked if it had started yet.

Today (Day -4), he got his second dose of chemo and his first dose of anti-thymocyte globulin (ATG--an immunosuppresant drug). The ATG infusion is very long (8 hours). We had one little bump about two hours into it when Aaron suddenly started shaking uncontrollably. Luckily, the nurse acted on it quickly, and it had fully subsided within an hour. He had a little bit of nausea this evening as well, but that's been about the extent of the bad stuff.

In addition to the cytoxan and ATG, Aaron is also on three anti-nausea meds and several other preventative medications. He is literally being pumped full of things. (Last night, Maxwell said, "I can just imagine the look on Aaron's face when he gets to come home from the hospital, and he is loosed from all his safety restraints." It was such a Max way of putting it, but I agree that I think Aaron will be overjoyed when he is no longer tethered to an IV pole all day.)

I am convinced that Aaron's good response to all the drugs so far is a direct result of the hundreds of prayers being sent heavenward on his behalf. Sometimes people, almost apologetically, tell me, "I know it isn't much, but I'm praying for Aaron." To which I always respond, "Those prayers are the very things buoying us up and getting us through." We are being blessed day and night because of those prayers.

A couple of months ago, I came across a scripture that has since become one of my very favorites:

"Let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed."
--Doctrine and Covenants 123:17 

After Aaron was diagnosed, I showed it to him and we decided to adopt it as our mantra during this health challenge. We love it because it places a certain amount of responsibility on us ("cheerfully do all things that lie in our power"), but after we've done our part, we get to stand still and see God do His mighty work.

With that in mind, we decided that we would try our best to follow all instructions from the doctors and nurses with exactness.

I can tell you that even just three days into the treatment, this isn't easy.

It means that if the nurse says to do oral care four times a day, Aaron has to do it, even if he doesn't like it (spoiler: he doesn't).

It means that if Grandpa brings a big box of beautiful pastries, but the nurse says they don't comply with Aaron's low microbial diet, he can't eat them.

These things are hard. And unfortunately, most of the effort is required by Aaron, not me. I wish I could do it for him, but I am merely the cheerleader on the side, reminding and encouraging and supporting, but ultimately he has to choose for himself.

This morning his nurse said to me, "I cannot believe this kid. My hardest patients (by far) are always the 10-18 year-old boys, but not him. We need to have him give a workshop to the other kids on how to be a good patient. If you ever decide to give him up for adoption, I'll fill out the paperwork for myself immediately."

This is not to imply that he has been unfailingly optimistic. He has not. His mood is volatile. Little things trigger a downward turn. Those are the times that make me hurt for him. I won't go into specifics because these are not my experiences to share, but all of the good moments we've had this week have been balanced out with ones that are decidedly more bitter.

But we are trying. We have our scripture on the wall (my dear friend, Sarah, turned it into an awesome poster for us); we keep a daily list of blessings; we take frequent breaks from screens (Legos have been the activity of choice for sure); we get to know the nurses and staff; we laugh and joke; we look for the good.

In short, we are trying to cheerfully do all things that lie in our power. (But with only three days checked off, we still have a long way to go.)

And every day, we have the opportunity to stand still and see what more God can do. And so far, He has done a lot.