All of those things normal kids do - learning to sit up, crawl, walk, feed himself, talk - he never did any of those things. He got around by wheelchair or log-rolling on the floor or being carried by his family or friends. When he couldn't live at home he lived in children's hospitals and eventually a group home. I've heard the stories of how hard it was. My momma has told me of scars left from all of the difficult decisions that have to be made for the life and the family of someone with severe disabilities. Sometimes there just aren't easy answers. Sometimes life just hurts.
I've heard people say that that kind of life just isn't worth it. You wouldn't find anyone with that perspective among my family - not among anyone who knew my Uncle. He had plenty of disabilities. His abilities far outstripped them. And how could it be? How could a person who never spoke a single word, never walked a single step make any kind of impact? What kind of worth does a life like that have?
He died the night after Thanksgiving. We all went over to his group home that day. Brought treats and laughed and played with him and his friends. He was ornery as ever - pulling us close like he wanted to give us a hug or kiss and then pushing us away with a grin. The next morning my daddy woke me up to tell me that he had died in his sleep. 31 years old when they never expected him to see 31 days and it was still too soon. I stood up there with my family at his visitation. What kind of turn out would you expect for a man who never spoke a word to a soul? The line stretched out the door of the funeral home and the people just kept coming. I listened while they told my mom and my uncle and my grandparents just what he had meant to them - how he had impacted their lives.
My grandpa says that he used to pray that God would make his son whole. He says the answer to that prayer wasn't a change in his son's condition, but a change in his own vision. Where he once saw all the ways that my Uncle's life was not whole, God gave him eyes to see the way that a broken life can be beautiful. We can think of all the things he missed - all of the he-never-got-to's. But what about the things he did? What about the person he was, not in-spite of but because of his disabilities? Some people read that God uses the weak. Every person that knew my Uncle Craig got to see it.
The truth is that we are all broken. The truth is that each one of us will end our lives with a list of never-got-to's and some of those lists will be miles and miles longer than others. It doesn't make a bit of sense and it's heartbreaking. And words can't come close to conveying the grief of knowing that all you could dream of for a precious little gift hangs in the balance. What if that precious baby never walks, never talks, never dances at the high school prom or at their wedding? Never drives a car? Never rides a bike? What if a precious little life is lost before those tiny eyes see the light of day? What if that dear one has to fight for every breath?
There are not words to comfort that kind of grief.
But life is always grace, always gift. And for all of our wonderings - for the wonderings of my family as they watched the life of my uncle and for the wonderings of each and every parent who faces uncertainty surrounding the health of their own precious little ones - there is one thing that is sure. The God who created that life crafted it with love. That whole thing about being fearfully and wonderfully made? It was true for my uncle and it is true for each and every person even if they are born with disability or disease, even if their list of never-got-to's is the longest imaginable. We can trust that God, who loves better than the best of fathers, has the very best in store for his little child. And no matter what he will use the gift of that life to bless each and every person who touches it. He works everything out to our good like that - taking what is broken and making it the most beautiful gift of grace that goes beyond all imagining.
I first wrote this blog over a month ago after learning that the baby girl my cousin is expecting may be facing some hardships. I didn't publish it because I just wasn't sure that the time was right and I didn't know many specifics on her diagnosis. Now another ultrasound has confirmed that this sweet baby has a kidney disease that threatens her life. If she survives pregnancy and birth she will eventually need a kidney transplant. My heart is broken for my cousin and his sweet family, but in the middle of all of the tears and prayers for this baby girl, I keep thinking of the name they gave her before they ever knew a thing about her little kidneys - Gracie. Grace means gift and doesn't she belong in our family? Didn't we witness once the power of a life that didn't follow our plans and won't we welcome this sweet little gift with open arms, no matter what her life looks like?
If you are reading this, please pray for Gracie and her family. That she would be well, that her lungs would be strong, that her kidneys will remain cyst-free as long as possible, and that all of those who love her already can keep open hands to receive the gift God is giving in her life. She has a fight ahead of her and she could use your prayers.