July 22, 2017: Mornings in Pajamas

For the first time in a very long time, we—Matt, me, G, and H—didn’t have anywhere to rush. On the morning of July 22, 2017, we didn’t have to get up and out of bed to hurry to t-ball or soccer or a birthday party. We had nowhere we needed to be until the afternoon. So we did nothing but sit around in pajamas and watch Descendants 2 on the Disney Channel. That afternoon, we went to a barbecue. The kids swam, the adults chatted, and afternoon slipped uneventfully into evening.

The messages and emails do not reveal what, if anything, I noticed about Matt that heightened my anxiety. Given how soon things will start to happen, I’m sure I noticed something concerning, but I didn’t text anyone about it. I didn’t email or call Duke. And I definitely didn’t bring up my concerns to Matt. (He was doing the hard work of healing. He didn’t need even an ounce of my worry to burden him.)

If there was something to notice—and I do mean if because the possibility that I was looking too hard is never far from my thoughts—I kept my worries to myself.

One year ago today, the story is nothing but lazy mornings and sun-drenched late afternoons.

In the days after Matt’s doctors told me he had weeks remaining, the kids’ therapist suggested we complete one more family project, create one more memory together. The idea was to have Matt participate. But we ran out of time. The prediction of weeks turned out to be too generous; Weeks was only days.

But in Post Hope, the pattern is always the same: nurture the heartache and adapt to the reality. The other day, we—G, H, and I—began work on that family project, threading Matt’s memory into each piece of the design.

A part of the project required us to think of a word to describe what we did as a family. G and H fell silent. At first, this silence broke my heart. I thought: we didn’t do enough. We’d had so much time and we didn’t do enough as a family. Should we have spent those lazy mornings engaged in something defining?

We’d tried skiing years prior and it hadn’t quite stuck (although, I’ll asterisk this sentence and return to it in December). We’d tried ice skating. We didn’t go on long family bike rides or hikes or picnics. We couldn’t think of a single activity that defined what we loved to do as a family, and the silence that filled the space where that activity should have been cut to the very depths of my soul. Guilt and regret knotted up in my stomach. We should be able to think of a word, right?

The silence didn’t last. After a moment, G spoke up. Then H. Then we all had words. We couldn’t think of one word, so we found many: basketball, LBI, Jets, zoos, movies, bagels, mystery rides, BBQs, and more. After today’s post, I can add “mornings in pajamas watching the Disney Channel” to the list.

As I came to the end of today’s post, I tried to figure out how to link all of the rambling I’d just typed into our story of hope. Maybe: appreciate the little things; don’t forget to remember how it felt to curl up on the couch with two kids who’d left toddlerhood behind. Always a good reminder, but all the writing advice I’ve read says to avoid cliches. Maybe: regret is, unsurprisingly, razor sharp. True, but regret is also a poison. And though I have regrets, I refuse to let our story be ruled by razor-edged poison.

The thought I kept cycling back to was this: maybe a year ago today we should have spent the morning on some activity that would have defined our family life, and maybe we should have started the family project before the doctor spoke the words that extinguished hope for good. But that didn’t feel right. I’m not telling a story of should (which is suspiciously close to regret). So just like with the art project, I took a moment and kept looking.

And found this: in not doing what we should have done in a perfect world, we found a quiet joy in a movie, we found a silent strength in changing our Post Hope plan. We found a dozen words instead of one.

We found a way to write our story the way we wanted it written. And I think, what I’m learning, is that hope is the story you tell when you give yourself the space to take a minute, take a breathe, ramble, even, and see what happens when you don’t say should.

3 thoughts on “July 22, 2017: Mornings in Pajamas

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