My small group Bible study came to a close this last week, having just wrapped up a year-long study of Exodus, learning all about the Israelites who wandered the desert after fleeing Egypt and the God who brought them there. They were no longer slaves. They had survived atrocities and abuse at the hand of their captors, and now they were traveling as a unit to the Promised Land. It sounds dreamy, right? But they cried out and complained. “Why did you bring us out here just to starve to death?” “How long must we remain here?” “Let us go back to Egypt. At least there we knew what our life would look like.” I can relate. There is something harder about the unknown, even as it stacks against assured struggle. But the truth is, they couldn’t go back. I can’t either. It seems at times as though my life were split in two when Eliza was born…the before and the after. There is no returning to the life before. And despite my early yearnings that there would be, I’m so thankful now. Because the wilderness has shaped me too. It has formed in me endurance, empathy, wisdom, patience, trust, reckless love, and deep joy.
I keep thinking of those Israelites, and I keep relating to their longings. They craved security, control, and predictability. And in return, they were given everything and nothing at all. They had exactly what they required of that day…enough food each day and a cloud or fire to follow, but there was no storehouse of extra “just in case” provisions aside from the sabbath allowance and no itinerary of where and when they would go next.
I don’t know what Eliza’s future will look like. I’m hopeful that we will find a real treatment for PWS. I long for her to feel full, and I long for her to have meaningful relationships…a best friend, a husband, a child. I long for college and a career that she chooses. I long for independence. For good health. For deep love. But I can’t plan those things for her. I just can’t. I can only follow today’s cloud, stay close to tonight’s fire, and find contentment with today’s portion. And that’s the whole point, isn’t it? No one has a crystal ball and a get-out-of-suffering-free card, but we often fool ourselves into believing we do. Being a parent of a child with special needs doesn’t remove the crystal ball. It just removes the veil of disillusioned thinking that allows us to believe we do. And that’s a gift because unless we know we need something, we don’t seek it. We don’t come with empty hands and open hearts to receive it because we’re too busy looking at the mirage and holding the cheap imitations to see and experience the real thing. God created “every good and perfect gift.” Not some. Not most. Every single good and perfect gift is from above.
As much as I wish at times that I could take the reins and decide the course of my life and the lives of everyone I loved, I know in my heart of hearts that I’d cheat us all out of the very best stuff…the stuff that makes life deep and rich with meaning. So I will keep asking God to guide our paths, and I’ll keep trying to hand the reins back to him.