I look down at the face of my “special needs” child, unaware of anything but her sweet smile, and I completely understand why God made me oblivious.
As a young girl, I walked down hallways with my nose in a book, running into walls. In Walmart, mom would scold me for wandering off, my attention totally fixated on a tube of lip gloss or a pair of flip-flops. Strangers had to choose another path for their shopping carts as attempts to move past me went unnoticed.
I wasn’t trying to be rude. I simply lived in my own world. Life and necessity have drawn me out of that bubble, but there is still a bit of oblivious left.
I was pushing Olivia in her stroller the other day, preoccupied by beautiful scenery, when someone asked if she has special needs. It caught me by surprise. She wasn’t wearing her glasses or hearing aids, and the fact that she doesn’t walk yet was hidden by the umbrella stroller. To me, she looked like any other 3-year-old, and while the question didn’t offend me, it did make me wonder how many curious glances I’ve missed.
If the looks happen, it’s probably better that I don’t often notice. Through her mother’s eyes, Olivia is purely a gift—a bundle of joy and contagious laughter. There is no other person on earth that can make me smile as easily and as often as she can.
Yes, at times my mommy-heart aches for my little girl to know the wonder of the sound of chirping birds or the intricacy of a butterfly’s wings. It’s true that sometimes I check for a fever and get bombarded by fear. I find myself praying for healing often, and the petition for grace, strength and faith is a daily one. I do get tired of doctors and hospitals, but I’ve never seen myself as the bearer of any great burden.
Once in a while, someone says something that, if only for a moment, makes me look for some reason I should be feeling sorry for myself:
“Bless your heart.”
“That’s a lot to deal with.”
“It takes a special kind of parent.”
They mean well, but comments like these puzzle me. They seem startling and out of place in my little world–the one where I am the bearer of this great blessing.
Please don’t feel sorry for me. My mind can hardly register pity through the strong sense of privilege that fills my soul.
I may not know what it’s like to have a conversation with my daughter, but when she wraps her arms around my neck and pulls me close, there are no words.
I’ve never watched my baby take her first toddling steps, but when she feels her way across the house without help and crawls up into my lap, I’ve seen a miracle.
I don’t have any funny kid-dialogue to post on Facebook, but the evenings spent just the three of us, laughing because we can’t help it? Those are better than a thousand social media likes.
When we find something Olivia truly enjoys—like dipping her toes in a river or a gooey bite of fried cheese—I feel like a rockstar. She snuggles up on my shoulder, not a care in the world, and I remember why there’s nothing to fear. A new syllable is spoken, or a giant red button deliberately pushed, and I can hardly contain my excitement!
Olivia smiles knowingly for no reason at all, and I sense the presence of God and of angels too, maybe. Her rare glance across the room and directly into my eyes sends me over the moon with happiness.
A burden? Never. She’s a different kind of blessing—one I wouldn’t trade for all of the “regular” blessings in the whole world.
Do you remember the first day of 2nd grade? Neither do I. In fact, I may remember one of the roughly 75,000 minutes I spent as a second grader. If I recall correctly, I was reading a Baby-Sitters Club book and had to ask my teacher to read a diary entry written in cursive at the beginning of one of the chapters.
Arbitrary Questions and Random Thoughts
The 2nd grade question has been floating around in my head for a few months, ever since Robert and I attended a conference and one of the speakers brought it up. We didn’t finish the conference. Robert’s dad passed away, and during that time I wrote a post that was meant to have two parts: A Time to Die and a Time to be Born. I never wrote part II, because it has taken three months for everything that was flying around in my head to settle in my heart. Until that question collided with some others, it was all a cerebral Ping-Pong match. I’m still not sure I can put it to paper in with any coherence, but I’m ready to try.
It’s the mother of all questions: the bane of the preschool-toting parents who hear it from morning ’til night, the food of philosophers, and the hammer that shatters the naïve world-view of a sheltered adolescent leaving the nest. Why?
Why do bad things happen to good people?
Why do the young die too early?
Why do the old die alone?
There are many variations, but the why never changes. When it was my turn to ask why, I never made it to the colossal question. Oh, I asked it in pieces and parts, beating around the bush–always leery of stepping over an invisible line that would leave me doubting the God I’ve loved since I gave my heart to Him as a little girl. I’ve tired of the never-ending doctors appointments and wondered as the milestones pass–first birthday, 2nd, now almost 3rd–when the miracle will come. But, I stayed clear of the big one, the question the world assumed I would ask: “Why was my 2-year-old daughter born with a disorder that doctors expect to take her life sooner than later?”
Why not ask Why?
The first instinct of many is to blame God, but honestly, I didn’t. I still don’t. I know that God is the author of good, and that evil is not a created thing, but rather the absence of His goodness. Evil is the stuff that fills the chasm that disobedience made. The plainest revelation of the character of God came to us in the person of Jesus Christ, and Jesus only did good. He “went about doing good and healing all who were oppressed by the devil, for God was with Him (Acts 10:38).”
This verse couldn’t spell it out more clearly: there are the good guys and there are the bad guys. In one corner of the ring we find Jesus–sent by the Father and empowered by the Holy Spirit; in the other we find Satan–the first to rebel against God’s good plan, striking the blow that opened the chasm.
As certain as I am that genetic disorders are not the work of God, I also know that He is fully able to speak one word and send them to oblivion. God could’ve thwarted Satan’s plan before Olivia was born, leaving us blissfully unaware of the attack on her life. He could have healed her the first time I prayed, or the tenth, or the fiftieth–shortening our struggle and easing our pain. Therein is the inevitable question: not “Why did God do this?” but “Why hasn’t He stopped it?” I never asked the question–for some reasons that I can identify and others that I can’t:
I love God. Asking that question seemed equivalent to a slap in the face of a benevolent Father.
Posing a question like this is as dangerous as being 30 feet in the air in a blinding snowstorm and stepping onto a 4-inch beam. You better know which way is forward.
Philosophical questions got pushed to the side by a steady stream of practical, how-do-I-move-forward questions.
My faith was just a thread. It was only holding because God kept graciously reinforcing it with reminders of His faithfulness. I wasn’t going to go after the thread with a pair of scissors.
Why ask Why Now?
Almost two years into this journey, I can ask the question, because I have an answer. The question no longer holds any power over me. Struggle gave way to need, then dependence softened the soil of my heart so that it would accept the seeds faithfully planted by my Father. One day, I woke up to field of flowers where thorns once grew wild.
Before Olivia’s diagnosis, I frequently found myself as the soil full of thorns in Matthew 13’s parable of the sower. (Sometimes, I still do.) I heard the Word of God in abundance, and even allowed it to grow roots. Too often, though, I let superficial worries and cares (about money, relationships, the future) to choke the Word before it could flower. I’m thankful for the grace of God that helped me to lean on God when trouble came, so that He could till the stone-filled dirt into good ground.
Inside the picture of a blooming field is one part of the answer to the why question. At times, God allows trouble so that we will look to Him and find the grace to grow in the light of His countenance. And His countenance is full of peace, hope, and joy.
Here is the honest truth: I’ve experienced more peace, hope, and joy in the two hardest years of my life than in the 25 easier ones before. It’s an anomaly, but its real.
Another part of the answer to the why question is found in the glory that God has gotten and will get, the people who have seen God’s goodness on Olivia, and those who will be impacted by it in the future.
I don’t know the full answer to why and probably couldn’t articulate it if I did. But my heart is at peace. Here’s why:
“He has planted eternity in the human heart.”–Ecclesiastes 3:11
This from the wisest and wealthiest king who ever lived–the man who also said:
“I devoted myself to search for understanding and to explore by wisdom everything being done under heaven … I observed everything going on under the sun, and really, it is all meaningless–like chasing the wind.”–Ecclesiastes 1:13-14
King Solomon had the world at his fingertips, literally. Yet, he found it all meaningless. And it is meaningless in the same way that a line of dialogue means nothing without the context of the play. Apart from the greater story, our lives are but a breath. We are born with nothing, and live a life full of stuff that we can’t take with us when we die.
The answers to big questions and to the meaning behind our lives can only be found in their connection to the big story–God’s story. While it is not for us to understand everything (Ecclesiastes 3:11 continues with ” … but even so, people cannot see the whole scope of God’s work from beginning to end.”), we still understand that there is something bigger than ourselves–a purpose higher than our own comfort.
He has set eternity in our hearts. So, the first day of 2nd grade is forgotten amidst the 30,000 days we may have on earth. The problems we face fade in the light of eternity. And our God–who is Alpha and Omega, Beginning and the End, really does send genetic disorders into oblivion.
I want to write part III of this series: how the days of our lives count for something, even though they are but a second against eternity. (If we’re lucky, it won’t take me another three months.) But for now, here’s a song. This is my first attempt at playing piano, recording and mixing on my own, so please don’t judge too harshly. :) The lyrics are below.
Oasis by Holly Chapman
You will remain, You’re still the same in every season.
Your Word endures, it’s ever sure throughout the ages.
Are you Alpha or Omega? You are both, and You are present with me now this moment and forever. Liberator, are You Master? You are both, and I’m the slave been set free this life, I will surrender.
You have set eternity in my heart. You have made everything so beautiful … in it’s time.
Like the sky, Your love goes on beyond the storm. Endless horizon, You never change, I can’t contain the wonder of Your power, nor explain it
Like a flood, Your goodness rolls through desert land. The water rises, and from the sand blooms mercy’s plan the wonder of Your grace, it’s an oasis.