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.