I cried in church yesterday. I cried hard in church yesterday. My 10 year old son, John, stood next to me during worship time. He loves music. He loves the drums. And we have a great worship team. The music is rich and it always reaches right into my soul. For years while John was on chemo, I cried every Sunday during worship time because it was such a release, a re-set so to speak. Here I am, God. I’m broken and I hate what we’re going through, but it’s in your hands. You give and take away. Please let me keep my Johnny Bubs.
I haven’t cried in church for a long time. Yesterday, however, the floodgates opened, and here’s why. Yesterday it was all suddenly clear. What once felt like the rug being yanked out from under me was all blessing, only blessing. What was promised came to pass. Yesterday it all came full circle, but to understand what happened yesterday you have to understand where the circle began.
My son John has Down syndrome. I’m not proud to say that the day of his birth was the most difficult day of my life. A day that should have been one of celebration turned to one of deep sorrow when I heard the news of his diagnosis. Fifty percent of babies with Down syndrome have heart defects. Maybe he’d have a serious heart defect and die quietly before we ever brought him home from the hospital. What mother thinks these things? Down syndrome wasn’t a problem I wanted to deal with. His heart was fine and we took him home when he was four days old.
I cried often in the beginning. I cried for John. I cried for my other kids thinking I had ruined their lives. I cried for myself thinking I had ruined my own. I felt inadequate to be the kind of parent a child like John would need. What would be expected of me? Would I be required to fight for his rights?
And I prayed. I remember sitting in my living room with the morning sun shining through the front window holding little baby John tight and praying, God, you made John. You put that extra 21st chromosome into each of his cells, cell by cell. I know you can take it out cell by cell. Please take it out.
God didn’t take it out. He didn’t change anything about John and his diagnosis. It became apparent that the only thing that needed to change was my heart. On another morning several weeks later I was again holding John tight, sitting on the edge of my bed, praying to God to help me accept everything about John. I don’t know if I actually heard God’s voice or if these words just popped into my head: “He will bring you great joy.” Really? OK, God, I’ll hold onto that.
When John was diagnosed with leukemia at 2 ½ years old, Down syndrome ceased to matter to me. Watching your child suffer and having to make peace with death render little things like extra chromosomes meaningless. And now, 10 years later, Down syndrome is merely a nuisance. Down syndrome affects everything about John’s life, but he isn’t Down syndrome. He’s a little kid trying to make his way in the world like every other kid. My job is to help him in any way I can so that when I’m gone he can operate without me. My job description isn’t any different for John than for any of my other kids.
Which brings me back to yesterday. John reads well and likes to sing along with the music, but yesterday during one song the projected words were in cursive. John’s still learning to write in block letters. Cursive isn’t even on our radar, but I knew yesterday that it should be. John needs to learn to read cursive even if he never writes it, I thought to myself as I sang the words and John sang to that song by repeating what I was singing.
Then he threw his hands into the air. He does this every week observing the members of our congregation who raise their hands in worship. John takes it to a whole new level, though! Sometimes he looks like he’s directing air traffic. Sometimes he mimics the movements of the drummer. Yesterday he was completely absorbed singing, waving his hands, worshiping God in his own way. And I started to cry. John’s love of music, his love of life, my love for him and my desire to make his life better by helping him learn to read cursive all brought me someplace I had never been before in all my years of going to church. What I felt in that moment was complete, soul filling JOY!
“He will bring you great joy.” And in that joy you’ll know that you are dearly loved by your creator, and you’ll know that what you once saw as a burden was only ever meant for good.
That’s why I cried in church yesterday.