Waiting

is the hardest part. I think most would agree that Tom Petty had that right. We have known it to be true through a host of experiences. It is tempting to describe what we are doing now as waiting. In some small senses that is true. We are still waiting for decisions around potential proactive treatment measures. We wait weekly for lab results and chimerism results, which, by the way, were all good again this week. Labs look great and chimerism is 100% from last week.

However, in a larger sense, with Jennings, we are not waiting. He has no detectable disease right now in his body. From that perspective, when we feel like we are waiting for something, we try to banish those thoughts from our minds. The only thing left to “wait” for is bad news, if it should come. How do you wait for something that you hope never happens? It’s an endless cycle of no news is good news. How do you wait for no news?

So, we find ourselves in this tension. Jennings is doing so well, recovering. He could have a normal life ahead. Do we live like that? Or, to quote the old school Tim McGraw song, do we live like he’s dying? The answer, like with most situations, lies in a delicate balance somewhere in between. We ask ourselves often and talk openly about what we want to do with “this time,” all the while not knowing how long or short it may be. We probably err on the side of making the most of the short-term. And we hope & pray that we can look back on this time as an unnecessarily extravagant indulgence in one child’s experience. That may sound like we’re trying to “live his best life now” or vainly create heaven on earth. If we’re honest, there is probably some of that, but I think we are more often concerned with cherishing him, letting him know that he is loved, and creating memories for the rest of our family that have a shot at sticking for a lifetime.

Here are some that may or may not fit the bill…but at least we’ll have the pictures to show for it.

This was Friday night family night at the Redbirds game, coincidentally playing North Carolina’s own Durham Bulls. I use the term playing loosely as they went 1-5 in a six game homestand and were losing 8-0 Friday night when we left. You can see that two of our four have now outgrown their outsized fear of mascots and people in animal costumes. However, Henry would have run all the way to Arkansas when he saw Rockey the Rockin’ Redbird if L had not been right there to catch him.

We took a stroll through Mud Island River Park on Saturday where we spontaneously got a great family picture with the big Memphis sign. A guy and his wife saw us and offered to take a few quick pictures with L’s phone. It looks as if we were staged by a professional photographer, but we each did this 👇 on our own.

We couldn’t believe it when we looked at the picture. Yes, just like you not believing me now that it wasn’t planned. It seemingly captures each of our personalities as well.

Here are a few more from the weekend for your viewing pleasure. That’s Charlotte looking her best for Mother’s Day. Henry and Jennings are below at a Sunday evening church service, which was part of Lauren’s request for the day. Henry was clearly happy to oblige his mom’s request for a picture on her special day. The right side is more from Saturday’s trip to the park. At the top, small river, smallish bear. The middle is looking south from the end of Mud Island…those white tents in the distance are the set up for this week’s World Championship Barbeque Cooking Contest. The bottom is the composite shot of the sign.

This week has been typical of the last six or so that we have all been back together. It will probably be typical of the next six or so that we will spend here. Jennings powering through homeschool lessons trying to learn a few of the skills he would have gained from Kindergarten. Henry and Charlotte splitting their time terrorizing Miss Emily or the other kids in the two’s class at preschool. Caroline independently doing her thing, rocking second grade at St. Mary’s and playing second mom at home. Lauren and I tag-teaming between school drop-offs & pick-ups, doctor visits, homeschool teacher, etc. All of us together watching episodes of Kasklena (Charlotte for Selena), playing outside in the grassy square while Henry chases everyone with his remote control shark monster truck, and this week at least, admiring Caroline’s muscles.

She’s been obsessed with them since the game Friday night. An usher came up to her in the concourse and had a game ball held in his bent arm. He told her she looked like she had some big muscles and then gave her the ball by putting it in her bent arm. The other night at dinner, Jennings didn’t want his green beans (the only “normal” dinner food on his plate mind you). Caroline encouragingly said, “I love green beans. They’re what give me my big muscles.” Pulling up her sleeve and flexing, “Look at these puppies.”

Naturally, the other three followed suit and everyone was comparing biceps. Poor Jennings is skin and bones right now, but he’s convinced his are big. Charlotte, as you can see above, is still a little dough baby. Henry, on the other hand, could take them all. He’s the only 3-year-old I’ve seen with legit muscle definition. #mealticket

Here’s a few from the week, minus the gun show:

As I shared before, we should all be living like tomorrow is not a guarantee. To most of us, though, this remains a concept either out of reach or out of mind. Lauren and I were so bad at it that now that we are acutely aware of it through diagnoses and statistics, it feels foreign and we are unsure how to proceed. We want desperately to celebrate like the parents in the video for Raise a Hallelujah.

How long do we wait before it feels safe to do so? Are we even waiting? What are we doing right now? Please continue to pray for his complete and total healing as we trust in God’s goodness and sovereignty. We can, should, and will press on. We will trust God for our future and do the next thing. He is at work and He is with us…in our moments of clarity and our fogs of confusion.

“Come now, you who say, ‘Today or tomorrow we will go into such and such a town and spend a year there and trade and make a profit’ - yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes. Instead you ought to say, ‘If the Lord wills, we will live and do this or that.’” James 4:13-15

#allinforjennings