Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack. He has seen the movie and heard the music before, especially listening to the CD over and over. But time has gone by, and Aaron doesn’t remember what the story is about.
During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life. I couldn’t hide it from Aaron if I was going to tell the story correctly.
“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”
Aaron thought for a minute.
“You have to see it as love,” he said. “Love with a little bit of sad.”
His comment blew me away. I was legitimately speechless.
I’ve thought a lot about what Aaron said. I realize that he, in those few words, so perfectly described our life with him.
This life of parenting a special needs child is not a cake walk. Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good. Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.
Gary and I have choices to make every day as we parent Aaron. Yet no matter what moments we face each day, we love Aaron fiercely.
What is our focus? Is it love, or is it sad?
We can’t ignore the sad. That would be denial.
We’re sad when Aaron has seizures.
Sad when sometimes those seizures cause serious injuries.
Sad when his seizure meds make him so sleepy and tired.
Sad when he must be poked with needles so often.
We’re sad when his behaviors break his own heart.
Sad that he still refuses to travel to meet his new nephew.
But wait. I need to remember what Aaron said.
Love, with a little bit of sad.
We want our life to be lived with a major on love and a minor on sad.
Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.
Seeing the love he has for animals of all sorts.
The way he takes huge delight in the unusual.
We love the joy he shows in sharing.
And the big smile he gives when I pick him up from his day group.
I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.
I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.
I love his random love notes.
And that he’s willing to take an occasional picture with Mom.
I love looking out the window and seeing this scene.
I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.
We have to see it as love…love with a little bit of sad.
He Said What?! 