Trees on the Riverbank

On April 2nd in Wichita, Kansas, my nephew Cedric John Smith was born without much fanfare or hoopla.

No one was really happy.

You see, Cedric was created with a problem. Who knew that peroxisomes were such important things? Or that the lack of functional peroxisomes in the cells could result in what sounds like ingredients in Krispy Kreem donuts—very long chain fatty acids (VLCFA) and branched chain fatty acids (BCFA). Both definitely sound like they can kill you.

Cedric has a rare genetic disorder called Zellweger Syndrome. Cedric’s parents found out while he was in the womb. In a cruel game of genetic roulette it was their second child with this disease. Sometimes life sucks.

In this case, Cedric isn’t—sucking that is. He can’t swallow and gets his food through a tube that goes down his nose and into his stomach. Every three hours you hook him up to a special pump that drains the contents of a plastic bag into his stomach bypassing his mouth altogether. Flavor may be something Cedric never appreciates. He can’t hear well. He has seizures. He isn’t expected to live very long.

But his parents are amazing. They hold him and coo to him and talk to him. They get up at midnight and 3am without grumbling. They know in a matter of months they will be planning a funeral but they don’t hold back their love, giving it freely amidst tears of sadness and coping.

We weep with them.

They know what to expect this time because seven years ago they had a girl named Alethea Loy with the same thing. Back then her parents did the same thing-- love when love is hard. Give everything to a losing cause. Bankrupt their souls for the life of a dying baby.

To be honest, Cedric is creating issues for me. See God, I have a problem. Cedric is making it hard to love you. When I hold, Cedric I see the precious face and feel the warmth of life and begin to feel the love for him. But it hurts. I get sad and cry way more than I like to. I make stupid jokes to cover up that I’m crying. No one laughs. For days at a time.

I can’t help but ask that dreaded question, “Why?” Why couldn’t he be normal? Why couldn’t you have answered our prayers for healing? Why did it have to be this way a second time for Natasha and Wes?

For sure “Your ways are not my ways,” and I say it as a taunt in my anger. At times like this and with Rachelle’s illness and during Natalia’s migraines—all things that I’m helpless to change but want to desperately—I feel like a pawn in a giant chess game. We are getting sacrificed and used. I wonder if you care.

But “Why?” is probably the wrong question. I think asking “Who?” is a better question that leads down a better path. Who are you? You once asked one of your followers, “Who do you say that I am?”

Your word shows a creator God weaving an incredibly complicated plot in the universe. We are part of the story.