October 12, 1982, marks the day I thought my heart would stop and the world would come to an end.
While my heart didn't actually stop, although it did skip a few beats, my perception of the world and my family’s future was changed forever. This was the day that my husband and I learned that our two sons both had Fragile X syndrome, a genetic disorder that causes intellectual disability and symptoms often associated with Autism Spectrum Disorder. I later learned that it was me who is the carrier of the Fragile X gene.
The doctors handed us the diagnosis of this condition without a guidebook or instructions. We had no idea what to do, yet we knew we had to somehow move forward.
All I could think of that day and in the days to come was, "Why, God? Why would you let this happen to me, to us? "
I was angry and resentful towards God. I argued with God, asking,
........“Are my boys' disabilities supposed to help make the world be a better place?
..............."Were they created this way to help me be more accepting of others?”
As my sons grew older, they began to understand that they were different from other kids. Sometimes they acted in ways they didn't want to, which was hard on them.
My questions for God continued as they grew up. ......Why would God allow this?
...............Were they born to be this way? .................Is this what a loving God intended?
Eventually, I came to understand that the answer is "Yes."
I found answers to my questions in scripture.
In Psalm 139, the psalmist says, “He knit us together in our mother’s womb and knows all our days before the world was created.” Job also says, “What? Shall we receive good at the hand of God and shall we not receive evil?”
These scriptures remind me that life isn’t supposed to be easy. Life is a continued learning experience, and sometimes events occur without explanation as to what the lesson is. God sees the end from the beginning. He surely knew of the hope that would be stolen from us on October 12, 1989. Just as surely, God must grieve this, too.
After we received the news that day in 1989, I was angry, and I blamed God. The notion of my ever “forgiving God” seemed ridiculous, even offensive to me. I couldn't comprehend how a loving God could allow the pain and loss that I was experiencing so intensely. I had a hard time of letting go of the dreams I'd had for raising “typical” children. I struggled to let go of the image of what I thought life ought to give me.
With time, God does heal the hurt. But for this to happen, I needed to reconcile myself to God, which meant becoming friends with Him. You see, I’d always been in awe of God, respected Him, and acknowledged God my spiritual Father. But I'd never considered God as a companion and friend. In my suffering, I came to experience God as a faithful presence and companion through the unknown. I realized that I must expect suffering and loss, accept it, and find God’s companionship through it. Faith became an act of letting go of what I expected for myself and my sons.
I pray that I can continue to let go of what isn’t, and to hold on to what is. God tells us, “My thoughts are not your thoughts, neither are your ways my ways, says the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.” (Isaiah 55:8-9)
God promises that even if the world tears us apart, God's ways will triumph. All my troubles are trumped by the power and promise of Christ. I've discovered that God works for good through the tragedies.
I had a choice back in 1989, and I have the same choice to make every day.... choose to be bitter, or to treasure what I have and adjust my perceptions of life. Peace comes to all who live as people of love, who look at what they have as a blessing, and who pass blessings on to the next person.
God is my strength through grief and struggle. Perhaps reaching this point means that I have forgiven God.
Chris Fabry, in his book, Dogwood, said this about life: “Basically life is a dance through a field full of cow manure. Most people won’t even go into the field; they go around it and pretend. Or they try to tiptoe here and there and stay close to the fence. They don't see that the fertilizer creates beautiful flowers and some of the greenest grass you’ll ever see. Put on your hip boots and waltz through the cow pies.”
With God's help, I pray that I can continue to do this.
Dayle lives in McPherson, Kansas, with her family. She graduated from Bethel College, North Newton, KS, and worked as a social worker before getting a teaching degree in special education. She taught special education in Newton, McPherson, Inman, and Lindsborg, Kansas, for twenty-four years. Now retired, Dayle enjoys hiking, parenting her adult sons, and reading. She attends First Mennonite Church in McPherson.