Well, They are Pretty Frightful

posted by Momo Fali on January 29, 2014

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!”

Chick Magnet

posted by Momo Fali on January 26, 2014

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.

chick magnetIndeed, 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.

chick magnet 2Someday, 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.

Reality Check

posted by Momo Fali on January 16, 2014

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.

Echo

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.

He Gets That From You

posted by Momo Fali on January 14, 2014

Last week my son got upset by something he had seen on television. He was sitting with both of us, completely supervised, but it was a movie scene which was a little too violent for his special needs brain to wrap itself around. Thanks a lot, Gollum.

My husband kept playing the stereotypical man card saying things like, “You’re fine! Go to bed.” I, on the other hand, hugged my boy, wiped his tears, and explained why we thought he’d be able to handle watching it (even though *cough* I knew he wouldn’t) and then we discussed, at length, the difference between traditional animation and computer animation.

At the end of the night, he put his 50 lb. body on my lap and said, “Dad says I got upset because I have too much of you in me, but I’m glad I do because you care.” I told him that he has plenty of his father in him and that Dad does care, but doesn’t know how to show it. Then I called a therapist for my husband. Not really, but I thought about it.

A couple of days later, my son and I were driving when we saw a stray dog. I stopped my car to help, but someone came out of a nearby apartment and took over the rescue operation. As we drove away, my son piped up from the back seat, “I’m kind of glad we didn’t have to help that dog.”

“Why, buddy?”

He replied, “Well, I can say this because it’s just you and me, right? I thought it was kind of ugly because it was one of those dogs whose tail stands up in the air and you can see its butthole.”

I laughed, “You sound like your dad!”

Excitedly, he said, “I do? I guess I do have him in me after all!”