When the Light Hits You--You Shine

Our grandson Reilly went to safety school this summer. This is something the city of Springfield does for its four and five-year-old citizens. It was a good experience and he came home with lots of songs and information about crossing streets, resisting strangers and playing in water.

One noon Reilly came home with a new bicycle reflector, something his teacher had given to each of the kids. He proudly placed it on the table for all to admire, but as the afternoon wore on he seemed to become upset. Finally he declared, “It’s not working!”

“It needs to be outside,” our daughter Kristin explained. “Let’s go put it on your bike.” So they went into the garage and Reilly’s grandpa fastened it loosely to the back of the bike. Then they took it outside. Reilly watched the reflector for barely a minute and then insisted, “It’s still not working! But I know what to do. Let me have it, Mom.”

Out of curiosity, Grandpa unfastened the reflector, handed it to Reilly, and then he and Kristin watched in horror as Reilly ran to the family car and began banging it against a brake light. After a moment of paralysis, the grown-ups rushed over, yelling, “Reilly, what are you doing! Stop!”

When Reilly finally calmed down, he explained in confusion that his teacher had promised him that the reflector would shine when the light hit it.

Young children don’t do well with metaphor. They tend to be literalists. Apparently he had been wondering how and when light would hit the reflector. When that hadn’t happened, he tried reversing the formula and hitting a light. That’s good five-year-old logic. But it didn’t work.

Recently our whole family has been hit by the light, and we’re still reeling. Light in this case refers to knowledge, understanding, the correct naming of things. But this is no longer a story about Reilly. It’s about his little brother, Peter. In my last blog (see “Praying for Peter”) I wrote about our growing concern that something was not right with Jon and Kristin’s new baby boy. I told of our adventure in prayer and how that seemed to reverse the symptoms. I also wrote of our sense that the battle for Peter’s health and wholeness was not yet over, of our commitment to prayer and whatever else God might be asking of us.

Just two weeks ago, Jon and Kristin were able to get an appointment with a specialist, and it did not take him long to name Peter’s condition. He has optic nerve hypoplasia, a non-hereditary, non-curable underdevelopment of the nerves that connect the eyes to the brain. None of us had ever heard of it. In layman’s terms, Peter is legally blind. That had, indeed, been one of our fears, but we were not quite prepared for the naming of it as reality. Our Peter, blind.

Optic nerve hypoplasia is usually accompanied by all sorts of complications, so Peter is undergoing a series of tests, including a brain scan. So far, the news has been encouraging. There is no structural damage to the brain, and his hormone and electrolyte counts seem normal. But the tests will continue throughout his childhood. He does turn toward the light and seems to “see” some things up close (perhaps light and shadows), but we won’t know how much he can see until he’s three or four years old.

We’re still adjusting, seeking God for his mind. As we told Kristin, this is not something that is happening just to her and Jonathan. It’s happening to the whole family, and we will all participate in whatever changes are necessary to assure that she and Jon are not overwhelmed and that Peter has a full and useful life.

I am especially encouraged by Kristin’s maturity in the middle of what seems immense to her and to all of us. After the initial shock wore off, she wrote a letter to let family and friends know what was happening. She describes the ways God has been preparing her for this and she thanks God for giving them of honor of being Peter’s parents. Looking forward, she writes, “Jon and I are excited by the possibilities the future presents. A month ago I took an online class to keep my teaching license renewed. I don't know now if I will go back, but you never know. I need to keep taking courses to keep my license from expiring if I want to have my options open. I am looking into taking online courses in Braille and working with children who have impaired vision through the Hadley School for the Blind in Utah. It could be I work with Peter in a school setting in the future. We may even have a seeing-eyed dog in our home. How cool is that???”

She ends her letter by saying, “So, now you have heard our story, or just the beginning of it. It is sad news and there is grief involved, but there is also a lot of hope and the sense that God's hand is involved in all of this. We are privileged to have Peter in our family and his life will be a glory to God!”

It’s become a family custom for me to write a special blessing for each of our seven grandchildren, close to their time of birth. I wrote the blessing for Peter on March 3rd, the night before he was born. It now seems more appropriate, and more encouraging, than ever:

“Dear little boy,
“Seventh grandchild, son of our daughter, tomorrow is your birthday. You will ‘March 4th’ into our lives, and we eagerly await your coming. Your big brother, Reilly, has been counting the days for several weeks now, and your sister, Paige, though hardly understanding what’s happening, is talking about ‘her’ new baby boy.

“So you see, we really want you to come. And we promise to do our part to give you a grand welcome. It’s in Jesus’ name that we bless you with these prayer-gifts:

-- The covering of a family that wants you and loves you: your daddy and mommy, brother Reilly and sister Paige, two sets of grandpas and grandmas, and lots of uncles, aunts, cousins and friends. We’re here for you, and we’ll be around for a long long time.
-- A heart that will learn to love Jesus and want to follow him all your life.
-- A mind that asks good questions and loves to learn.
-- The ability to listen well: to your mommy and daddy, to other people, to the wind in the trees, to frogs, to songs and stories, to your own heart.
-- The gift of words: the ability to express yourself well without insisting on your own opinions, the ability to tell a joke and a story, a love of language.
-- A spirit of adventure: in the forests and paths and cultures of this world, and in the many worlds inside books.
-- A few good toys to play with, loyal pets to love, good friends, good food, sweet dreams and a warm blanket (that you can even take to college, if you want).
-- A persistent spirit that works through problems until they’re solved, that knows when to wait and when to take risks, that is smart enough to listen to good advice (and sometimes even give it).
-- A special work to do that will make this world a better place because you are in it.

“Tomorrow you come. Tomorrow we will learn your name and begin to know who you are. It may take us the rest of our lives to know you, but it will be worth it.

“So come. Your place is ready. We can hardly wait.” --Grandma and Grandpa

Hal and I are still committed to battle in prayer for Peter. Our greatest commitment is to listen to God and learn to pray according to his will. The yearly meeting theme this summer (Northwest Yearly Meeting of Friends), “Thy kingdom come, thy will be done, on earth as it is in heaven,” encourages us to pray boldly. We’re praying for healing and sight. At the same time, I will learn Braille and rearrange my schedule to give time to help out in whatever way seems best. This may seem contradictory, but as a poet and a pray-er, I’m at ease with contradiction, ambiguity and the gradual dawning of the way forward.

Last week during yearly meeting, I became more aware than ever of all the parents and grandparents of special needs children. Your courage and faith, your triumphs and even set-backs, help me now as I adjust. This is a new adventure, something I never would have asked for, but something that has been given. I am affirming, along with Kristin, that God will be glorified in Peter’s life and in our response. The light hits us, and we shine.