When Brenna was born, it felt like everyone around us was holding their breaths… waiting to see how they should respond, waiting to see whether they should send a congratulations card or a sympathy card, waiting to take their cues from me and Evan.
There was so much unknown by everyone in the days immediately following her birth that we were quiet, trying to piece together what was happening, wrestling with our trust in God, leaning on our very close family and friends.
But with the single click of the computer mouse four days after Brenna was born, we shared with the world about our baby girl. And through that blog post, we conveyed our tremendous pride and love for our daughter.
We focused not on the tragedy of the situation, but the miracle.
We chose to celebrate our daughter.
And with us, everyone else celebrated too.
People cried with us for our struggles and for Brenna’s pain…but more importantly, they celebrated her life with us.
We called her beautiful, not wrong. We believed whole-heartedly that she was given to us uniquely and beautifully created by God, not that she was given to us broken.
Life truly is what you make it. Making a life beautiful is not always easy, and in fact, probably isn’t easy most of the time, especially when things get messy and when things get hard, really hard.
But God has given us the courage to find the beauty in this life, not the tragedy.
And so we will keep learning how to celebrate that.
Tomorrow is Rare Disease Day. Tomorrow, for me, is not really about the many diseases, their names, their symptoms and health affects. Tomorrow is about honoring the beautiful people whose hearts and souls and lives are shaped by rare disease. Tomorrow we will celebrate not the tragedy of rare disease, but the beauty that can be found in it.
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