Bodie was discharged Thursday night, to the local Ronald McDonald House! He had follow-up labs Friday morning, which looked pretty good. His CMV levels continue to trend down, thankfully! But his liver enzymes remain high and his white blood cell counts and neutrophils continue to be dangerously low. So we will go back Monday morning for labs again.

Dusk is flying up Monday morning, and he and Bodie plan to do some fun (outdoor) touristy stuff during the day on Monday while Amy catches up on some work. Then, if his labs look improved enough, we’ll drive back home to San Diego Tuesday.

If all goes well, we’ll have a follow up virtual visit with his transplant team on Tuesday. At that point, we will discuss how soon he can return to school. Because he is still so severely neutropenic, he really could become septic within hours of the onset of a fever. As a result, we are anticipating that his team will want him to wait a little longer to return to school. They will probably want him to be a little more recovered from the CMV, and for his neutrophils and white blood cells to come up to a safer level before giving the all clear to safely return to school.

In the meantime, we’ve been taking lots of walks, meeting up with transplant friends also in the Ronald McDonald House and the hospital, and (trying to) work on schoolwork.

In the midst of all of this, it’s very easy to feel sorry for ourselves. Particularly when our friends not in the medical world tell us they can’t believe we’re doing this, that it’s so hard, that we’re amazing for pushing through like we did. And they’re not wrong. Of course, this is hard, and unthinkable and unfair.

But then something happens, and we are reminded of how much worse it could be.

Today, we were an in Uber to pick our van up from the shop (much like Bodie and I, our van did NOT want to return to Stanford, but that’s a whole nother Oprah).

During the ride, the kind Uber driver shared with us that he had lost his two year old daughter this past summer. She had woken up one morning struggling to breathe, and nothing could be done despite best attempts by paramedics and a ventilator at the hospital. His wife then passed away from a heart attack shortly after. And he is now left to raise his 11 year old son and 6 year old daughter on his own. As he poured out his broken heart to me, my heart broke right along with him. The tears just streamed down his face as he spoke of the ache and the loss. He talked of Bodie and how wonderful it was to see how well he was doing, how it somehow gave him some sense of peace.

I didn’t know what to say. I had no words. There are no words that can heal that kind of pain.

But I listened. And thought of the many heart friends I have known and loved over the years who have faced the same agony of this sweet man. Friends who have lost their babies, their young children, their teens, their older children.

The brokenness and unfairness of it all is just so overwhelming.

When we got to the end of the ride, I asked our driver if he was religious. When he confirmed that he was, I asked if I could pray for him. He said of course. And we prayed together. I knew I didn’t have the words to comfort him, but I also knew that the God I worship would, because He too, has lost a child. He lost His son, and could provide a peace I couldn’t.

When I finished praying, our driver asked if he could show me something. He shared a video of his sweet daughter and his wife, where his daughter was giggling away. He just said “Look what I lost…”

As we got out of the car, he told me that he felt God had put us in his car for a reason, that meeting Bodie and I was the highlight of his day, and that he would be praying for us. I told him we would be praying for him too.

During the entire conversation, Bodie had remained silent, staring at his phone. I wasn’t certain he was even paying attention. But when we got to our van and I opened the doors, I looked at him and realized his eyes were all red and puffy. He had clearly been crying. I asked him if he was ok and he said no. I asked him if he wanted to talk about it and he again said no (teenage boy for you, right?). He was so sad for the man. But he let me give him a hug and hold him for a second. As we got into the car and he was still crying, I reminded him there are no coincidences in life, and clearly God had put us in that Uber at that exact time for a reason. Maybe it was so that we could somehow minister to that driver. But also because I think Bodie and I needed a reminder of how very lucky we were.

We rode quietly for a while, both of us profoundly affected by the experience.

Then, this evening, when I was in line at Trader Joe’s, grabbing some snacks for Bodie, I received an email notification. A heart kiddo who I have followed for some time, 13 year old Cam, received his heart just recently, on February 18th. He had really been struggling post transplant, but everyone was so hopeful we would pull through. The email notification, from Cam’s Caring Bridge site, said that the complications had just proved too much for his body, and he had passed away today.

My heart just broke for Cam’s family. I thought of Bodie and our scariest moments with him, and realized everything we feared in those moments came true for Cam’s parents.

This medically fragile journey is hard.

There are no guarantees.

It is so hard to live amongst the constant loss and pain. The survival guilt is real. The fears of what might someday come to be run deep.

It’s in these moments that I look at Bodie and think of how lucky we are.

Being out of school is annoying.

Spending time in the hospital is unsettling.

Having our family separated is disappointing.

But, in the end, how very lucky we are to be together. Annoyed, unsettled and disappointed. But annoyed, unsettled and disappointed together.

So tonight, I should be yelling at Bodie to focus on his schoolwork and telling him how important it is.

And that stuff IS important.

But instead, all I want to do is snuggle him.

And go Pokémon hunting with him.

And whisper to him how lucky we are.

Because, despite all the odds and everything life has thrown at him, we are indeed the lucky ones.

So very lucky indeed.