What Does Hope Look Like?

Hope, Emily Dickinson said, is the thing with feathers that perches in the soul.

And sings the tune without the words –
And never stops – at all –

 

I think she might be right. When my hope flutters into sight, it looks remarkably like the Carolina wren that sat on my wind chime yesterday and bubbled a song to me through my kitchen window. That wren looked too fat to fly and too ordinary to be beautiful, but nobody had told it this—so it flicked its tail and sang and flew, so beautiful it made my heart hurt.

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Hope makes my heart hurt. My hope flies and soars, its song filling my sky, but I hurt with the song because I fear the day I will learn my hope is too fat to fly. I fear the loss of this buoyant hope.

The mother of another little girl with seizures told me it is easier to not hope. Don’t expect miracles from the latest drug. Don’t get too excited over one or two seizure-free days. Just take one day at a time, and don’t expend too much energy in an unknown future.

She has had years of seizures to learn this, and I see why she said it. Far better to live the day we are given than to yearn for a seizure-free someday at the expense of enjoying today. At the expense, too, of falling apart when hope does not materialize into reality.

But my hope will not die. As long as options still exist, as long as there is something we haven’t tried, my hope insists on singing. But as long as there is hope, there is also fear, because what if—what if?—my hopes are crushed? What if Tarica does not qualify for brain surgery? What if the seizure focus is in an inoperable part of her brain? What if the surgery is not successful?

What if I fall apart?

Against the odds, against my better knowledge, I hope my little girl has a seizure-free future. And now, more than ever, hope sings loud. The day of revelation moves inexorably closer.

We have a date for her hospital stay. For ten days in the beginning of the February, Tarica will undergo an unrelenting series of capital-letter tests, which will decide whether or not she qualifies for brain surgery.

Hope looks as foolish as a baby King sleeping in a manger. But without that King, hope is foolish and feeble and as short-lived as a wren song. There is earthly hope, the hopes for a sunny day, a medical miracle, a good marriage, a better job—the feathered, nomadic hopes we all have. And then there is divine Hope, which is the King Himself. Joel 3:16 says, “The Lord will be the hope of his people.”

I cannot help but hope for my daughter, even if it means I might be setting myself up for a shattering. My King sees each sparrow fall, so I’m going to trust that if my hope plummets songless from the sky, He will see and will tend to my wounds.

He is the only Eternal Hope in a world of fragile, feathered ones.

5 thoughts on “What Does Hope Look Like?

  1. I always remember what my 5 year old and 3 year old told me when the doctor told me the baby I was carrying might not make it or have serious deficits…”Mommy it’s Jesus’ baby too he will take care of it” we are all his children and the hope of his promise keeps us going and picks us up when we fall. There are also many prayers being said for Tarica and your family daily, so of course there is hope…all things happen for good for those who love the Lord…

  2. I was blessed by your words this morning! I feel a kinship with you as I know what it’s like to hope for another seizure-free day. Our 10 yr. old daughter had several grand mal seizures, but has now been seizure-free for 3-1/2 yr. We have been told she should outgrow her seizures (which makes the hope soar high!), but every year her EEG again shows seizure activity which means we need to stay on the meds & our hopes dip down. We are thankful though that it means her meds are doing their job & we haven’t needed to increase the dose for the past 3 yr. God bless you in your journey!

    • Welcome, Karen. Thanks for sharing your story. Grand mal seizures are truly terrifying. I rejoice with you that the meds are working and pray your daughter may someday live without them. Living with seizures is a cycle of hope and despair. I can’t imagine doing it without God.

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