Battling the Bitterness of Parenting a Disabled Child
On October 16, 2006, my oldest son was diagnosed with autism. That word — autism — spoken over my son and over my life on that day sent me into a year-long spiral of grief and confusion.
One of the most difficult aspects of navigating and processing my son's autism diagnosis was being around typical kids. I noticed everything: the way they talked to other kids, the way they hugged their mothers, the way they tied their own shoes, even their interests and curiosities. In those months, I left every playdate, church event, or trip to Chick-fil-a obsessing about what I didn't have and what my son didn't do. On each car ride home, my son sat silent and staring in the back seat while I sobbed and pleaded with God for a miracle. I wanted a kid who actually interacted once in a while, not one who counted storage units or intently searched for manhole covers.
Eventually, the sadness and grief developed into bitterness. Sitting at the playground, watching moms I didn't know push their kids on the swings, I internally shot my bitter arrows directly into their hearts. Why did they have it easy? Why did I have a child with a disability? I envied the sweet, affectionate interactions they enjoyed with their children and the ease of their mini-vanned, suburban lives.
Worse, I shot my bitter arrows at friends and family, who did nothing but show me love and support. It did not matter what they said or did to encourage me. It was never right. It was never enough. Because nothing they said could erase my pain or alter my circumstances. I felt utterly and completely alone, like I was the only person on the planet who was going through a difficult time. Certainly, no one could step into my shoes or know exactly how I felt. Or so I thought.
And so the bitter root grew wildly out of control, resulting in my own isolation and compounded grief.
Doesn't this happen all the time? Sometimes it is caused by really difficult life circumstances, like the death of a child, cancer, infertility, family issues, unemployment, marital discord, or the death of a dream. Other times it is caused by less-difficult struggles like frustration over external appearances, work problems, or stress.
We desperately want things that we don't have.
We believe that no one can relate.
We whine and weep and throw ourselves, tantrum-like, on the floor.
And we feel completely and utterly alone.
Who can understand our grief?
Who can know our pain?
We feel that we would be validated or that the pain might ease if someone just understood us. So we shoot our bitter arrows while we fruitlessly wait for someone to come along who understands.
In the midst of that year, on a day when I had picked myself up off the floor after a massive pity party, God walloped me in the heart with Proverbs 14:10: "The heart knows its own bitterness. And a stranger does not share its joy."
I know, it's kind of a weird verse, but it basically says that there are feelings we have, both joyful and sorrowful, that ultimately cannot be understood by another person. Sometimes we can't even express how we feel to others, and sometimes even when we try, when we lay it all out bare, we still aren’t fully understood. There are limits to human love, and if we rely solely on human love for our comfort, we grow bitter and hard and distant from others in our disappointment. Like I did.
Thankfully and incredibly, God loves differently. He is not hindered or limited in His understanding or love. He loves us intimately. All those feelings we feel about our life situation? All those thoughts we wrestle with? All those struggles to comprehend and navigate our difficulties? He knows them even more than we can articulate them to others, much less to ourselves.
St. Augustine describes God as being "closer to me than I am to myself." Because He knows us intimately, He also comforts us that intimately. He fully enters our pain because, unlike most humans, He can fully handle its weight, emotion, and complexity. We can go to Him and be understood. And that is when our pain is eased. From Him, we gather strength to face another day. Through Him, we see others with His eyes and we realize that everyone has pain. In Him, peace finds a dwelling place in our souls.
I don't know what you face today, but it is probably something specific to you and your life. Whether circumstances big or small, I hope you enjoy the comfort of godly, loving friends and family. But when they aren't enough — because they never will be — I hope you will run to the One who loves you with an intimate love.
On a related note, in November we are hosting our first disabilities conference, The Works of God: God's Good Design in Disability. It will be held in Minneapolis. Speakers include John Piper, Nancy Guthrie, Greg Lucas, and Mark Talbot. More details and registration information about the one-day conference can be found here.