Occasionally we get glimpses of what lies ahead, mostly through the CHASA family (facebook group and list-serve). What shines through most is that kids are amazing. They persist, they are innovative, and they overcome.
It’s that fine balance between refusing to accept conventional medicine’s “good enough” and pushing too hard… (every time we have a specialist consult where we are told E is doing “very well, considering her diagnosis”, and to “expect things to degrade over time” and “the best we can hope for is maintenance of current function”, I feel like screaming). Finding the line between letting kids be kids, but also prioritizing alignment and function.
Breathe. She will be okay. She *IS* okay. And so is your child.
Rarely do I have nights where I remember my dreams, and rarer still are they about anything that makes sense. However, the other night I had a dream…:
E is an older teenager, sitting in a cafe. Her hair is long and straight. She is pretty, in a modest sort of way. She is earnestly talking with a man who is much older than her – with facial stubble and weather-worn skin. He looks like a man who has seen many things – haunted, rough.
He says to her, “How can you believe in a God who would do THIS to you.” (he gestures to her postured affected hand) “What good is such a God to you?”
She leans forward over her drink and I see her take his hands in hers.
She answers, slowly and confidently, “God didn’t do this to me – our world is a broken one. Suffering, disease, and death are a part of it. It wasn’t meant to be so, and we feel the loss of what was, what should be. All the things in this life are wrappings and bows – distractions from what really matters. Inside lies our heart, the essence of who we truly are, our soul. We obscess over the wrappings but neglect the gift inside. It’s not about me. It’s about God. The story is about Him. We decide what part we play in that story. So it’s not about what good God is to me, but what good I am to God. Do I choose to be with Him, or against Him? There is no middle ground. No matter my circumstance, will I trust Him?”
For we are to God the sweet aroma of Christ among those who are being saved and those who are perishing.
2 Corinthians 2:15
When I was in labor with E, my mom felt a strong urge to pray for her. There was a battle being fought for E’s life, and for a moment she was caught between birth and death. And here she is today, with a story to tell. A journey of her own that continually unfolds. Our lives do not consist in the abundance of our possessions, our accolades, our fame, our fortune, our beauty. What counts is not the outer vessel, but the beauty that lies within.
What gives E’s life meaning is not how well she overcomes adversity. She may very well need to adapt and find different ways of doing things. What matters far more is her eternal significance. Will she follow Jesus? Will she lead others to Him? Because everything else in this life is peripheral.
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.