Pain and Wonder

 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

 

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Sunrise

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Sunset

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And a promise. 

This week,

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!

Later…

J: What does “fire” mean?

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Photo by Charles Gullung. 

11 thoughts on “Pain and Wonder

  1. When we’re faced with unanswerable questions, we have to hold on to the truth that God loves us and our loved ones more than we’re able. As much as we love, God’s love is so much higher; our little brains can not comprehend. And as a child we reach up to take His hand and let Him lead us in the direction He has chosen.

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  2. Oh! … well.

    I see that Princess-ness is a very Real Thing in the world of Julianna 😉 Michelle, please don’t do anything that makes your boss fire you, because Julianna Neeeeeds to keep her princess room, which is Very Important. Please be a good dr, Dr Moon – your princess Needs her Princess room!

    & Julianna – being ‘fired’ is when you do something bad or wrong, and so your boss takes your job away from you (if he’s mean, sometimes he will say ‘I don’t want to see you EVER AGAIN’) … but I don’t think your mom’s boss would fire her, because (I think) they know about you, CMT & your princess room 😉

    keep on keeping on guys – I giggled. Here’s to a week ahead with more giggly stuff, more blooming flowers (I note on instagram the blooming of Julianna’s floweryness), rainbows & sunrises! ❤

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  3. Michelle and Steve, you and your entire family are always in our prayers as you help J. through this time. Good and not so good moments–you are so blessed in this beautiful learning opportunity. I believe you are seeing God in a way most of us will not be until heaven, when all the questions will be answered (if we still want the answers). You are helping so many people as they move through life’s trials.

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  4. Life is incredibly unpredictable. I can’t imagine the rollercoaster you ride every day.

    But through it all God is with you.

    One elderly man who had died and returned told my husband – it’s like we are looking through glasses covered with mud. When you get to heaven, the glasses come off and everything is beautiful.

    Oddly, while it seems like Julianna has more mud because of CMT, I think her personality and spirit may show she actually has less mud. It is why she has so much joy despite all that happens.

    My prayer for your family is a little less mud.

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  5. So Much has happened to you all! I read the updates with trepidation and hope. Your ups and downs and sky high “little” miracles and bottom of the pit ultra lows. As my mother’s life closes, I find beauty where ever I can. It’s different than when a child begins this journey, no matter where they are on the road to “home,” it is always too soon. I have to say that with your help, Julianna has done more in a short time than most adults I know! She is more than amazing! She is a living miracle and as always a living, loving doll with a wonderful wit and wisdom that is a constant! I believe that living in an imperfect world and in imperfect bodies, we all suffer problems; some more than others. Choices made by others who abuse the freedom of choice God blesses us with can affect our lives in ways that were not in God’s plan. Some choices are made innocently and with out the realization that they could bring consequences. These choices are not by fault but by just not knowing what we don’t know. No one is to blame for those. That bad things happen in imperfect places, like the imperfect bodies we live in are not God’s plan but He does, w/o removing our freedom of choice, give us Himself to be with and a part of us! He brings comfort when all things are falling apart; He brings peace in the midst of pain and miracles happen. Some big, some small, some we miss entirely because we can’t see Him working behind the scenes! I haven’t answers as to why huge miracles don’t happen all the time and even why cures don’t just happen but again, choice and imperfection both of body and this earth made of dirt on which we live, are part of this life here. Knowing that there is better and greater and more than just Disney World or any natural wonder we already know of, is awaiting us brings comfort to a degree. It doesn’t take away pain and suffering of this life but it offers us knowledge that it won’t be part of the next life!
    I love a song entitled Blessings by Laura Story. It says so much about what we don’t have here but will eventually and the things we can not understand because with our eyes, the big picture isn’t visible. It brings ME peace. I can’t sing it for you and Julianna, but if you google it, think of it as a hallmark kind of card form me! I hope it offers some gift of what I wish I could offer you in my heart!
    All my love and many, many prayers to you all!
    Your mermaid friend across the states!

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  6. I love this conversation in this lost! We’ve never met but I heard about the tea party from Physician Mom’s Group and found your blog. I’m sorry she had to suffer but I’m amazed by what such a little person can teach us. She sounded so wise and I’m sorry she’s gone. Hope you can take some time off, your patients will understand.

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