Perspective

posted by Momo Fali on January 13, 2009

The way I look at the world has changed. It’s not because I’m getting older and it’s, for sure, not because I’m getting any wiser. It’s because I am the parent of a child who doesn’t fit the mold.

My son is not typical. He is not autistic, he doesn’t have Downs, there is no disease, disorder, or diagnosis of any kind. On one hand, that’s something for which I am happy. On the other hand, it can sometimes be frustrating.

The geneticists were sure there would be some way to classify him, but after extensive testing they came up with nothing. He is an enigma.

His expressive speech is that of a three year old, yet his teacher says he’s gifted. He is still in need of therapy, but our county agency doesn’t want to pay for it anymore because his I.Q. is too high.

He has a hearing loss, but it’s not something a hearing aid can help. He loves music, but can not sing you a song. He can read a book, but can’t tell you what it was about after he closes the cover. Yet, he can take a computer test on that book the next day and get every question right. So far this school year, he has taken 103 such tests.

His defective heart is stable enough that he can ride roller coasters and play sports, but an anesthesiologist at an outpatient surgery center won’t touch him because he’s a “heart kid”. Something as simple as ear tubes requires a trip to the hospital. A tonsillectomy meant an overnight stay in the ICU.

He’ll be seven in May, and as of Sunday he weighed 37 pounds. He can ride a bike, but can barely reach the pedals.

His is different. He is special. And, you know what? It’s all in how you look at things. My kid’s clock may turn counter-clockwise, but he still knows what time it is.

Like Father, Like Son

posted by Momo Fali on January 12, 2009

Yesterday afternoon, I took my sick son to an urgent care where he was seen by a kind and capable nurse practitioner. She quickly assessed him and wrote a prescription before sending us on our way. I kind of wanted to tell her this story. Kind of…

When our daughter was born ten weeks early via emergency c-section, my husband and I got a crash course in medical terminology. We learned all about NG-tubes, picc lines, desats, brady’s and many more words I hope you boys and girls never need to know.

We spent hours in the intensive care unit each day and picked up invaluable information from the neonatologists and our child’s primary care nurse. For 35 days straight, we sat at our daughter’s isolette reading her chart, working the monitors, and reapplying electrodes. By the end of that journey we felt like medical professionals ourselves.

Our son was born premature a few years later, but because of his heart condition he was immediately transferred to a children’s hospital where they had equipment to better care for him.

It was déjà vu with a twist. We were thrown into a familiar situation, in unfamiliar surroundings. Yet, we figured we were ahead of the game. At the very least, we knew the lingo and could communicate with the staff.

Or, so I thought.

Because I’m sure the nurse practitioner who met my husband upon our son’s admission was quite surprised when she introduced herself, only to have him say, “We’d like a real nurse, not one who’s just practicing.”

He Descends From George Jefferson

posted by Momo Fali on January 8, 2009

Yesterday morning I was giving my son some medicine when I accidentally bumped his head on a kitchen cabinet. Without even thinking I said, “Bonk!”

My son laughed. So I tickled him a little and said, “You’re bonkers!” He laughed even harder.

Then I remembered where we would be fifteen minutes later and I said, “By the way, when we get to school you can’t go around calling people bonkers. I was being silly, but it wouldn’t be nice to say that to your classmates.”

To which he replied, “Okay. I’ll just call them crackers.”

Hooked by the Horns

posted by Momo Fali on January 6, 2009

Dear NukeDad,

I had fully anticipated the Buckeyes eating Bevo for dinner last night, but apparently our defensive linemen are vegetarians. Who knew? Oh, that’s right…you did.


Congratulations on the victory. A year which gave Mack Brown his 200th win, and gave Colt McCoy an NCAA record for completions, also gave us Buckeye fans our third bowl loss in a row. You must admit, however, that we gave you a run for your money. You can’t tell me you weren’t a little bit worried. Give our quarterback a couple of years, and then we’ll talk.

At the very least, our band sounded better than yours. Oh, and as far as fans go, you can keep this guy…


Sincerely,

Momo