By Dawn Graczyk, Sunshine Mom

As the night winds down, I find myself in awe of the intentionality of my Father, who has indeed worked all things together for a purpose and for my good, whether or not I understand it. 

The Beauty of God’s Divine Orchestration

Sometimes it’s the wonderful things where I see God working. Tonight the moon is high in the sky over an Orlando timeshare that my friend has loaned us. Our refrigerator is full of food that Diane, my friend and Executive Director of Spreading Sunshine has purchased for us.  I would know neither of these women but for God’s divine orchestration which has led us to a shared path. 

God is Working Even When It’s Hard

Sometimes we have to believe that God will work through the harder things. Last night, Marissa fell while getting into bed. Within 30 seconds her eye was swollen and turning  purple.  It was soon clear she had a concussion.  

She was determined this should not end our trip, and I was determined to do my best to save her a hospital visit. It occurred to me how different this was from a few years ago when a concussion would have led me immediately to medical attention. 

Now, as concerning as it may be, it is an anticipated piece of our life.  How strange it is that a hiccup such as this causes me more heartache than the wheelchair, because it reminds me that we are not living a normal life. 

We’re a Unique Lot

None of my children are neurotypical. We are impulsive (hello cross country trip!) and yet, we all seem to fall on a spectrum of obsessive-compulsive disorder.  We have difficulty processing sensory input and become overwhelmed and distraught, but we also seek adventure.  We really are a unique lot. 

Everyone Has Advice About Parenting

It was only a few short years ago that my friends and I lived on a tiny Japanese island.  We homeschooled; we adventured. We talked about discipline charts and systems; we implemented chore charts. I honestly believed that if I found and implemented the right system, my kids would be obedient and ever respectful.  

I read the books and tried all the things, never stopping to consider that if any of these methods truly worked for everyone, there would be no need for “how to” parenting books. None of my friends or I were aware that our children were “abnormal.”

Websites, books, and even pastors weighed in.  The more I tried, the more deficient I seemed to be. I was caught in a cycle in which my worth as a human being was reflected by my children’s behavior.  My faith and salvation rested on the approval of my friends, church, and society.  

Have You Tried Teaching, Loving and Accepting? 

After Marissa’s fall, I was talking with a friend.  “I’m so tired and sad.  And I’m angry because something so relatively small reminds me how terribly abnormal things are.”  

“I get it,” she said.  “We were supposed to go out, but instead I am listening to my eight year old scream.”  

For 30 minutes we talked about the inappropriate things our kids say.  We laughed at each other’s embarrassing moments, and for each of us, these moments actually seemed rather awesome. 

Our doctor encouraged me to focus on teaching, loving, and accepting rather than punishing something that cannot be helped. 

“That’s what we are doing now,” my friend answered.  “It’s the only thing that makes sense.  I wish I had done that from the beginning.”  

This halted me.  I had been afraid to share any of this with anyone, and honestly more afraid to share it with my Christian friends, but this friend has been my model of faith and love for the past 10 years. I have no doubt in her parenting abilities and SHE STRUGGLES TOO!  

God Loves Us — Even if We Throw a Tantrum

Our children are not normal; neither are they boring. They are loving, compassionate and kind.  They are also prone to extreme fits of anger, violence, and swearing.  We love to explore the world with them, but also fear that they will do something terribly inappropriate, like mentioning to strangers that their pigs recently mated and are likely to have piglets. 

We don’t talk of these things, except perhaps with our closest friends, because deep down we fear we are not doing enough. We collapse exhausted in our beds at the end of the day, intensely aware of our failures, despite giving our children all we can. We cry; we scream; we curse. We would be banging our fists against God’s chest if we physically could. 

This sounds very familiar, doesn’t it?

God stands and lets us scream until we have no voice left. He does not chastise us or turn away. He showers us with mercy and grace and assures us of His love. No matter how many times we tantrum and no matter how disgracefully we behave, He loves us, fights for us, cries with us, holds us.

Normal is Overrated

Our children are not normal; neither are they boring. They are loving, compassionate and kind.  They are also prone to extreme fits of anger, violence, and swearing.  We love to explore the world with them, but also fear that they will curse or speak inappropriately in public.  They yell at us or hit us, despite our best efforts at teaching and modeling respect and kindness.  Those around us are eager to offer suggestions that have worked in raising their own children, or even their dogs (bless their little hearts). 

We want to scream, “We are not NORMAL!”  Instead we thank them and walk away.

We love our children with a fierceness that cannot be described by words. We get a glimpse of what our heavenly Father sees in us.  We are, “hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” 

We are humbled. We have been given a glimpse of the world that only our present situation could have granted us.  We have friendships enriched by shared suffering, bonds that could not be present without common pain. 

Our children are beautiful, joyful, and compassionate, not because of anything they have done or any merit they have earned, but because they are ours, and ultimately His.  They teach us what it is to be fully human and fully loved. They lead us to an understanding of unconditional love that moves us spiritually, breaks our heart and leaves us saying, “Lord to whom shall we go?” 

We Wouldn’t Trade Our Life for All the Normalcy in the World

Our lives are necessarily dominated by doctors appointments, therapy appointments, IEPs, and treatment plans on top of the usual housework, meal planning, and attempts at maintaining some vague caliber of parenting. 

Our children still fall. Hotel security brings us the ice pack, but also demands to see “the child” to ensure their well being.  We feel judged but also grateful that someone cares enough to ensure our children are not being physically abused. 

We are not normal or typical. We are too much for most people, and even this has a purpose to bring us closer to the people who stick around. It is a terrible, beautiful, crazy, jubilant life. I would not trade it for all the normalcy and order in the world. 

Click to learn more about Riding on Sunshine.