Life Interrupted

My life has been interrupted now for 10 years, 1 month and 18 days. I’m not sure the word interruption is an appropriate term any more; perhaps major life detour is more accurate. And as much as my life makes me crazy, I wouldn’t change it for anything.

10 years ago, I gave birth to a baby boy. At his birth, no one said he was perfect–he wasn’t, not by this world’s standards. The first birth defect was clear immediately, the second required emergency surgery at 5 weeks old. At that point, standing outside his hospital room at 2 AM, realizing my son might very well not make it through one more night, I felt the peace of God, knowing He knows what it feels like to lose a son, knowing God would see me through all the days to come.

My son survived that night, and every night since. Long before his first birthday or his first step, his third ‘defect’ (the word makes me shudder; he’s not defective!) became clear. Many scientific names describe his disability, but it comes down to this: his eyes did not work correctly. By age three, we had numbers to use: less than 20/400, legally blind. My life, our lives, were only just beginning to be interrupted.

I have another child too, a daughter, who is ‘perfect’ by this world’s standards. While it is not easy, it is certainly easier. Raising a ‘normal’ child is like swimming in the community pool: the water is clear, lifeguards are nearby, the edge is always within a short swim when a rest is needed. But raising a child with a disability is like swimming in a giant murky reservoir in the middle of the night, all alone, with no land in sight. Sometimes all I can do is paddle and pray for the night to pass!

Every major decision in my life, in my husband’s life, in our family’s life, has been based around what is best for this child with a disability.

Before he was born, I planned to take one year off from work; I took nine years. Life was interrupted.

We sold our house (Thank you God!) and purchased another, locating it close enough to town that someday, when all his friends have driver’s licenses and our son does not, he will still be able to be independent. Life was interrupted.

We planned vacations for locations he could safely explore and navigate and enjoy without perfect vision. Life was interrupted.

My husband changed careers, leaving his first dream of teaching for a career where we could afford all the medical expenses that came crashing down upon us. Life was interrupted.

We scheduled our lives around doctor appointments, referrals to specialists in other states, diagnostic testing, and six surgeries in less than ten years. Life was interrupted.

We sat through hour after hour of homework as he struggled to learn to read enlarged words when braille was deemed unnecessary, as he struggled to write his words in giant, sloppy letters, as he struggled to understand spaces between words and periods at the ends of sentences because he had never really seen them on paper. While our friends went to ball games and Bible studies, we sat around the homework table, trying not to cry. Life was interrupted.

Our interrupted life is messy, complicated, expensive and imperfect. And I wouldn’t change any of it.

“In all things, God works for the good of those who love him, who have been called according to his purpose.” (Romans 8:28)

I love God, and He is shaping me, through this life I never planned, into a woman who is willing to follow wherever He made lead me next. And more than that, my son has accepted Jesus Christ as his Lord and Savior too. And God is working for the good of my son; God is using my son, not in spite of his vision or any other obstacles, but because of them. My son is compassionate, he is humble, he is full of joy, he is gentle, all because of the obstacles he has had to overcome.

This is God’s plan in my interrupted life.

Why Seven Stars?

“Can you see the stars?” I asked my son.

“I see seven stars.  How many do you see?”  he replied.

We sat alone, the two of us in camp chairs, looking straight up at the nighttime sky.  The only remains of the campfire in front of us were orange coals, no flames.  The sun had long set, turning the sky to deep indigo, approaching total blackness.  A sliver of a moon, nearly hidden by lodge pole pines, began to disappear behind the Sawtooth Mountains to the west.  Somewhere behind us, his father and sister prepared for sleep.  No artificial light could be seen, no other campfires, no city skylines in the distance, no lantern lights from any campsite.   The night was nearly as dark as a night can get.  The sky was clear.  And my ten-year old counted seven stars.

“How many do you see?” he asked me.

I could not begin to count the stars on that summer night.  The Milky Way flowed through the dark sky like a mountain stream.  And my son counted seven stars.

“I see more than seven,” I whispered, choking back the tears at the thought of what he could not see, the grandeur of God’s creation that my son could not truly conceive.

Later, both children in bed, my husband and I sat alone by the campfire, now stoked with new wood, the flames lapping higher.  And I shared the story of the seven stars.

We chuckled as only parents of a child with a disability could.  If anyone else had laughed, or even smiled, I would have been defensive and angry.  But alone, we could share the moment, as we have shared the struggle.  Our son is vision impaired.  Multiple surgeries and ten years of miracles have moved him from legally blind to vision impaired.  But on that beautiful summer night in the Sawtooths, he saw only seven stars.

As we joked, one of us said “When he gets to heaven, he’s gonna say ‘WHAT?  You made how many stars, God?  And I never got to see them?”

“Or maybe,” the other replied, “He’ll just say “WOW!”

As I sat there, pondering my own vision impairment.  Which of God’s works do I fail to see?  What moments of grandeur do I miss?  When do I count seven stars, when in fact the stars are uncountable?  I must open my eyes, look through God’s lenses, to the world around me.  I want to see all the stars He created for me tonight.