Patience

This isn’t how the story is supposed to go. We closed a chapter, remember? The characters aren’t supposed to walk back through chapter 1 when they are acting chapter 2.

But, Kate is back in the hospital.

On Tuesday, they stuck leads back on her chest and plugged her in to the monitors. They stuck an IV in the same spot above her left ear where she used to have her PICC line. They stuck her with needles and swabbed her nose.

We walked into the same hallways that we walked out of six weeks ago.

And it is all sickeningly familiar.

A long story short: Kate got sick, so we are back in the hospital for a few days. Because of the trach, any illness Kate contracts is immediately a big deal because it compromises her airway. Imagine having a really stuffy nose but having duct tape over your mouth—that is basically how it feels for Kate to breathe when she is sick.

Thankfully, she seems to be doing much better now than she was doing Monday or Tuesday. Her fever has broken, and her secretions are slowly becoming more manageable. As soon as the doctors can identify exactly what she has and give us the right medicine, Kate will be discharged.

Kate is in the safest place right now. She should come home very soon, and she will keep on thriving. But, that doesn’t make it any easier to come home to an empty crib. Or to wake up in the morning with the dull ache that reminds me things are out of order. Again.

I’m not sure what I expected after coming home from our NICU stay. I knew it would be hard, I knew that we could land back in the hospital—that, in fact, it was inevitable because of the trach. But I didn’t know that the proverbial bumps along the road would send me sprawling across the pavement. That the smell of Purell in a hospital room would bring back so sharply the sting of helplessness.

And so, like David writes over again in his Psalms, I ask, How long? How long, O Lord? How long does she have to suffer? How long is she going to need this trach?

But I see my own impatience. I want to hurry to the end of the story and be done with pain. Be done watching my baby hurt.

But what if it is pain that changes us? That slowly carves us down to whom we are meant to be?

They say patience is a virtue. And so it is. The apostle Paul calls patience a fruit of the Spirit. And here’s what I think that means: patience is not something I can grow myself.

I can talk patience, I can think patience…try as I might, I cannot engineer patience. It is only when I must live patience that I can harvest that fruit.

So, we wait. We wait for results, for a treatment plan. We wait for Kate to come home again. And then we will wait some more. For the story to play out, for that day when we can look back and say, “Remember when?”

And we will remember that this was hard. But we will remember that He grew us.

Remember

Stories begin and stories end. After the resolving of a single conflict, fairytales leave the reader with the ever-elusive “happily ever after.” But what the fairytales won’t tell you is that “happily ever after” is its own sort of beginning.

For two months, we lived quite a story. Every day was packed full of anxieties and hopes, challenges and celebrations. Every day brought us closer to our end: home.

Shakespeare wrote, “What’s past is prologue.” And I believe him. With Kate’s ambulance ride home on March 31, a chapter closed. But it was only the first chapter.

And now, we are here. We are home. So, life begins and we step forward into the next blank page. But, before we step squarely into the next plot point, we must transition.

Transition phases in life are much like writing transition sentences. They are hardly ever interesting and, in my opinion, they are the hardest pieces to write. However, they are necessary. One cannot move fluidly through a story without a transition.

Nothing particularly earth-shattering has happened in the past month. We have simply been experiencing the growing pains of this transition phase—and “new normal” is slowly becoming, well, normal.

Kate has been doing really well at home. She is on track with all her social and cognitive milestones—every visitor seems to remark on her alertness and expressiveness. She smiles a lot, and is even starting to roll to her side! Doctor follow-ups have been going well and, with surgery and plenty of therapy, we can do a lot for her in the future. We are still working on an overarching diagnosis, but won’t have any answers for a while, if ever.

Avery is adjusting in typical 3-year-old fashion to having a new baby at home. She adores Kate, and loves to “pet her baby.” Kate, in turn, adores Avery and flashes a big, gummy smile whenever her sister comes to give kisses. Kate’s “special necklace” and “other belly button” are a non-issue for Avery. (Except, perhaps, when she tries to help suction the trach or hook up the feeding tube… lots of discussions about what big girls can do and what grown-ups can do…) However, having much less attention is pretty tough for her. Despite the fact that we have found some wonderful nurses who help take care of Kate and who are very sweet to Avery, life at home is different. It is difficult for a 3-year-old to comprehend all this change.

Lee and I are also adjusting. Things like trach care and g-button feeds are becoming as normal as changing diapers. (This is a real miracle for me—all things medicine are not in my natural wheelhouse.) I am slowly getting used to having nurses help me take care of my baby for 16 hours a day. (I hate asking for help. Like, really hate it. It’s a first-child, control-freak thing.) God has answered our prayer and we quickly found some nurses who are pure gold. But, I am certainly being stretched. It is hard having a constant audience—not only during my pre-coffee, pre-brushed teeth morning, but also when my house is a general disaster and during aforementioned toddler tantrums. (You know that feeling when your screaming kid throws herself on the ground at HEB because you wouldn’t let her pet the lobsters? Well, it’s like that—except at home. And without the lobsters.)

So, this transition has been a strange paradox of good and hard.

And, in the midst of exhaustion, the dark whisper comes: You cannot do this. You are not strong.

And it is easy—too easy—to slip under the fog of discouragement. To believe the lies that come to immobilize me.

But then—a word, a light: Remember.

This is not the pithy charge to “count your blessings” or “see the glass half-full.” Advice like that tastes bitter when the days are long. No, to remember is a richer task. When life seems static, I look back at the story already written.

As a character and limited narrator in this story, I sometimes have short sight. I’m thinking about the next day, the next page. But you, reader, probably see something clearer than I see it myself: God is working miracles.

That’s why I think God asks us to remember. We get caught in the current of our immediate circumstances and forget that He parted the waters. We forget the big story.

There’s a second time in the Old Testament that God parts the waters. Of course, we all know about Moses—there’s that famous image of Charlton Heston dramatically lifting his staff in front of fake storm clouds… so, we know that story.

But, it happens again with Joshua and the Jordan river as Israel crosses into the Promised Land. And God tells them to pile 12 stones in order to remember. Here’s why:

[Joshua] said to the Israelites, “In the future, when your children ask their fathers, “What is the meaning of these stones?” you should tell your children, “Israel crossed the Jordan on dry ground.” For the Lord your God dried up the waters of the Jordan before you until you had crossed over, just as the Lord your God did to the Red Sea, which He dried up before us until we had crossed over. This is so that all the people of the earth may know that the Lord’s hand is mighty, and so that you may always fear the Lord your God.” (Joshua 4:21-24)

When we pass along the stories, we remember the miracles. When we step out of the role of character and into the role of narrator, we can see more clearly the careful weaving of a truly great tale.

So, we pile the stones. We mark the miracles in such a way that people ask, “What is the meaning?” And because they ask, we can answer with a story of a faithful, mighty God. Sometimes, the story is for them… but sometimes, it is for us.

As I tell people where Kate has come, I remember that my Father God is for me. And then I remember that my great, cosmic God sees me.

And that is a humbling, lovely thing.