What is Kayli's prognosis?
It is a question asked of me time and time again, because Kayli has a diagnosis of Trisomy 18 (a diagnosis that carries a less than 10% chance of surviving to the age of 1). I'm sure the intent of the question (in most cases) is not malicious, but one that is asked with anticipated dread and a nervous tone. My quick reply is, "Kayli has outlived her prognosis". That usually is not a sufficient answer to quench the desire to know more about Kayli's iminent demise hanging over her head. The push for a more definitive answer leads me to respond with educated statements, with hope to connect the inquiring mind with God and Kayli's intent here on Earth with us:
First, I reflect on the definition of Prognosis: A forecast of probable outcome.
My extended response to questions of Kayli's prognosis, is that she will live long enough to strengthen your faith, to share hope with you, to educate you, and to connect you with your spiritual being. Kayli's prognosis of life next to yours, is determined on your understanding and acceptance of her abilities as well as her challenges. Kayli's prognosis in life on Earth is not limited to a determined life expectancy because she is unique and nobody has been granted the identical extraordinary life she has been granted. The prognosis of her body is the same as your bodily prognosis, there is no way to determine what tomorrow holds, only the desire to make the best of the days we have been given. She may live through the day, or she may live through 100,000 more days. Her body is a wonderfully and fearfully made creation, a one of a kind miracle by God just as yours is. Kayli's medical prognosis is somewhat dependent on the gifts God has granted the doctors, nurses, and medical professionals crossing her path, and what THEY choose to do with their gifts. One may say her medical prognosis is dependent on the care that is offered and provided to her. I guess in short, my answer to your question of Kayli's prognosis , or "forecast of probable outcome" is that she will have a qualitative life of profound inspiration to those who have the honor of connecting with her. Which brings me back to my short answer....Kayli has outlived her prognosis. She has exceedingly reached far and wide to connect with others, inspired many to share her faith and love for God and His son, and she has outlived the understated forecast of probable outcome set by many medical professionals.... I pray that my prognosis is as bright and as inspiring as hers is!
Well said, mommy. Your love inspires too.
ReplyDeleteSuch a sweet little Miracle!! You show them Kayli, you are not done until GOD says you're done!!
ReplyDeleteJust saw the video. We nearly lost 2 of our 3 children early in their lives. They're now all above 11 years now, and like Kayli, they were all born in April. My heart remembers those days very clearly. I think when people do ask, they're used to people telling them what the future will bring. They're used to being told the weather tomorrow, the tour will go this long and cover these locations, their fast food will be here in 90 seconds, and that Jimmy's expected to grow 5 inches in the next week (as a parent of teenagers, I know this as fact). They're not used to living from one breath to the next. They've forgotten what it feels like to have no rudder and no oars in the water, that feeling of utter helplessness and confusion as a crisis swirls around the heads and hearts of those involved.
ReplyDeleteI think your answer is awesome! It's hard to trust in Someone you can't see for the very real needs you feel. I imagine even another medical bill is enough to rattle one's cage after enough sleep has been lost. Yet you are not without help. You are not without hope. You are perplexed, but not in despair. 2 Cor 4:8-12. Let God carry you through the dark and tough times and press into him in the sunny, easy times (remember those?) and rest in His grace to meet your needs. He will do it! He is faithful even when we aren't. I pray you (and Kayli and your whole family) will feel His peace today. In Jesus name!
I'm just someone out there that just "happened" to run across your story on YouTube. What an amazing story. It's a reminder to me of how great God's love is for each one of us, and how we are to love.
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