Thursday, April 25, 2013
Today our niece, BryAnna, has had one of her greatest wishes come true . . . she left Riley Hospital without her trach for the first time in her life. For the first time she will breathe through her nose and mouth, rather than a tube inserted into her throat. After 10 years of wishing, hoping and waiting BryAnna can now enjoy what most of us daily take for granted.
Bry has endured a couple dozen surgeries in her short time, and done so with an immense amount of sass and spunk. She has Treacher Collins Syndrome. But I hesitate to leave that as such a simple statement, because I don't want her to be defined by her syndrome, by her limitations. She is so much more beyond that. And she has constantly fought to not allow those limitations to control her. Today she won . . . for those of us who are her family and friends, we all won.
But today has been preceded by many other days -- some won, some lost, some neither won nor lost, but were the in-between spaces where we just lived and enjoyed what we had. This journey has been long and rough. I have passed many hours angry and frustrated with what, not only my niece has had to endure, but also what my brother, sister-in-law, and our other wonderful niece have dealt with.
The pain I have felt has not only been my own; I have felt the hurt of my family, like a tulip near a watered rose. I may not feel the drops descending directly upon my brow, but as they melt into the earth they transform, they spread, and I begin to feel their tingles in my roots, shifting ever upward until I feel it become a part of me.
This is no occasion to be disheartened, however. The pain can be good. The pain can be beautiful . . . because the pain is real. And in it there is growth -- growth of the most wondrous kind.
Bry, you are the watered rose, rained down upon, with years of wish and hope. Through your pain you have grown. You have become stronger with every drop, more courageous with every dew, and more beautiful than the sun could ever hope to have illuminated.
And with all your pain, Bry, you have made all who know you grow as well. We have seen your stem grow strong, your petals dance in vibrant colors, no matter the severity of the wind and rain. Your spirit has spread into us all and has made all of our blooms a bit brighter.
So while I have shaken my proverbial fist toward the sky and furiously asked, "Why!" in many prayers, I am reminded again of God's mercy and grace, and how he never leaves us even when we think we are abandoned. And I am humbled . . . very, very humbled.
BryAnna, Jeremy, Mary and Nikole . . . I think you know that none of us know how you have done it. We are all amazed at your stamina and faith. No matter what other challenges you will confront in the passing years, at least you can be comforted with knowing that you were given strength and courage to overcome all the trials so far. And you can feel relief for conquering such a monumental struggle.
But today I will just be thankful . . . thankful for all of you, thankful for moments of brightness amidst the dark, thankful for growth and beauty and grace. And most of all, thankful for God's pure love for us all. Thankful . . .