Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life[a]?
— Matthew 6:26-27
For a long time, I thought that this verse (highly cited as an answer for those who worry) made no sense.
Nothing manmade approaches the beauty of a sunset, and human ingenuity seems crude compared to just about anything God designed. I know all that. But here’s the part that terrifies me: nature is brutal.
The natural world is wild and unpredictable. Impossibly graceful gazelles romp in the savannah – but also get eaten by lions. Baby birds somehow learn to fly, but what happens to the ones that can’t? It’s the circle of life, survival of the fittest: this means there’s as much death as there is birth.
When your child has a serious illness, brutal, wild and unpredictable is not acceptable. You are looking for a cure, a guarantee. Above all else, you want safety. It goes against nature to outlive your child, but…sometimes it’s exactly what happens. In nature.
There’s so much I don’t know about God and this world, about sickness and healing. There is profound beauty in this world, but it’s so messed up.
I believe that God can do anything, but I know that He doesn’t always grant physical healing. I don’t know why, and I don’t expect to find out – not in this world.
This is what I do know: Julianna is a magnificent child, a bright light. God made her this way, and she is blessed. Like the beauty of the lilies in the field, this cannot be denied.
It’s hard for me to reconcile all of this, and I think that’s OK. The pain and the wonder are all mixed together, and I don’t think that it can be any other way, not now.
One day, I won’t have to worry anymore. Until then, I cling to the little miracles that surround us, the sunsets and laughter and kindness. They are reminders that the best is yet to come.
If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world. — C.S. Lewis
We had a conversation that illustrates perfectly the wonder, joy, heartbreak and laughter that Julianna brings us — every single day.
J: Why was I born with CMT?
M: Oh Julianna…I don’t know.
Silence. I often tell her I wish that we could switch places, but I stayed quiet this time.
J: I don’t want to switch places. I want you to walk.
M: Oh, Julianna. But if we could, I would do it in an instant. I’d rather you walk.
J: You’re important too.
M: But you’re my daughter. If I could somehow let you walk, it’d make me so happy. But I can’t, so maybe it’s silly to even talk about it.
J: But what about your patients?
M: What about them?
J: You wouldn’t be able to see them.
M: Maybe not. But it would be OK.
J: Then your boss would fire you. And I don’t want to lose my princess room!
J: What does “fire” mean?