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.
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