“Hey, Mom. Look what I drew! It’s a rainbow monster!”
“That’s pretty cool, buddy. Is it…um…farting?”
“Yeah! And, you should see what it’s doing in the part of the picture I drew with invisible ink!”
As my 15 year old daughter came out of the bathroom last night, her 11 year old brother was waiting outside the door. When she entered the hallway, he jumped toward her with a loud, “BOO!” and scared the daylights out of her. I laughed. Mostly because she does her fair share of frightening people around here. Paybacks, dear. Paybacks.
I saw everything from where I was in my bedroom so I gave my son a thumbs-up and said, “Good job! You got her, but you’d better be careful because Dad scared me in that exact same spot when I came out of the bathroom one time and I almost pushed him down the stairs.”
He stared at me. “Really?”
I said, “Yes, really. I didn’t do it on purpose. It was just a reflex.”
And, the hearing impaired kid who suffered with belchy acid reflux for years said, “Ohhhh, I get it! So you burped and it almost knocked him down the stairs!”
If you’ve ever been to Key West, you know there are certain things you can find there; great Cuban food, the favorite haunts of Hemingway and Buffet, the Southernmost Point, a deliciously strong Goombay Smash, and a t-shirt shop on every corner.
When my family and I were there last year we passed one such store and my daughter stopped in her tracks. “Mom, look! This is crazy!”
On the other side of the glass we saw a t-shirt with my son’s face staring back at us.
Indeed, it was crazy. We all just kind of stared at it wondering if some t-shirt manufacturer had stolen his likeness from this site, but I couldn’t think of any similar photo that I had posted online. We chalked it up to extreme coincidence and, because my kid is a chick magnet we bought the shirt. Granted, the chicks are usually middle-aged women, but they tend to have more money than 5th grade girls so I’m fine with that.
Regardless, I forgot about the shirt until I snapped this picture of him at the hospital week before last.
Someday, someone will be lucky enough to have this real, live chick magnet. Someone will appreciate his strength, sense of humor, quirkiness, OCD, and blatant honesty, and they won’t even have to fly to Key West and pay $5.00 for it.
But, I sure as heck hope they have a low deductible.
Today was our annual reality check.
Before autism, eye surgeries, infections and hospitalizations; before kidney problems, hearing aids, choking and vomiting; before speech, occupational, physical and behavioral therapy. Before it all, there was his heart.
I was six months pregnant when he got his first echocardiogram. I waddled down the halls of our local Children’s Hospital, then laid upon a table while a doctor looked at the right ventricle of his heart. It couldn’t have been much bigger than a peanut. I was decidedly bigger than one.
When his rare heart condition worsened two months later, they took him from my belly and whisked him away to that same Children’s Hospital in an ambulance while I, again, laid upon a table. This time I was miles away and I didn’t get to see him until two days later when they let me leave the hospital for a few hours. It was Mother’s Day. It was fitting, but gut-wrenching.
They told us he would be sedated until he reached five pounds and then he would need open heart surgery. They were wrong. He came home three weeks later without that surgery. Almost 12 years later, though, it’s still looming over our heads.
So each year we trek back to those same halls and now it’s my boy who climbs onto the table. We are all stronger than we once were. He is 52 pounds of unstoppable energy. We are not. But, when we spy parents wearing “CARDIOLOGY” badges we smile, nod, and give each other mental fist bumps.
He still needs open heart surgery at some point, but we’re waiting. Stalling, if you will. Hoping, praying, and prodding the doctors to improve their technology so they won’t have to cut his chest open, spread his ribs apart and cut into his heart with a knife.
He had a heart catheterization when he was 13 months old and it was one of the easier surgeries he’s had. This is what we hope for. This is why we’re glad he’s small and grows slowly, so that his heart can keep up and each year that passes we know the doctors get closer to fixing this in a less invasive way. Today I chanted, “We want a heart cath! We want a heart cath!” If only my cheerleading could be enough to make it happen.
For today, though, he is stable and that’s really all we can ask for. That, and one more year until we have to walk those halls again.