Posts Filed Under Special Needs

About That Wish You’re Going to Make…

posted by Momo Fali on May 12, 2014

Two days ago was my son’s 12th birthday; the day to commemorate how far he’s come after beginning his life being whisked away via ambulance to another hospital. The same hospital where his dad and I have sat, time after time, wringing our hands in the waiting room during his many surgeries. This child of mine, for whom I have given so much time and even more energy is now nearly a teenager. I never thought we’d make it this far.

And, yesterday was Mother’s Day; a day to remember the first time I held my son. A day for me to cherish my boy and his sister and, honestly, after the 12 years we’ve had with my youngest that’s all I wanted to do. I wanted to savor every moment of motherhood.

The combination of these two important dates were churning up a lot of memories. I was feeling pretty emotional, so when I found out my son was writing some nice things about me at his Scout banquet the other night I thought it was perfect timing. I knew it would be just what I needed to make me feel better and focus on the present.

As I stood with other parents, he approached me with this.

Mother's Day

Then he handed it to me and said, “Here, Mom. I’m sorry I drew you so fat.”

It…Um…Loves You Too, Kid

posted by Momo Fali on April 17, 2014

“Mom, can you tell me about the autism arc again?”

“Sure, buddy. Autism is like a rainbow. There are people like you, with PDD-NOS, who are on one side of the rainbow and the more autistic behavior you have, the more you slide across the arc. The kids on the other side of the rainbow have a harder time expressing themselves and their feelings, but they understand things just like you do. In fact, even though some of them can’t talk, they are very, very smart.”

“What type of kids are in the middle of the rainbow?”

“Well, again, they understand things just like you do, but maybe they have more tics; like flapping their hands or spinning around, or maybe they have trouble talking to other people.”

“Mom, I think I’m in the middle of the rainbow.”

“You do? Why?”

“Because of my tics. And I know most people aren’t like me, because I really love your double chin.”

How Does Your Peanut Grow?

posted by Momo Fali on April 7, 2014

Roughly one month ago, I took my son for his 11-year check-up with his pediatrician. Yes, he’s almost 12. Don’t judge me.

When the doctor walked into the exam room she smiled, reached out to hug me and in a booming voice asked, “Did you think we’d ever see 11?”

No. No, I didn’t.

What I also didn’t see is that we’d get this far only to to need another specialist just shy of his teen years. After slowly discontinuing to see the gastroenterologist, geneticist, and urologist, and with still-regular appointments with an ENT, opthamologist, orthodontist, and cardiologist, the last thing we ever wanted to do was add another doctor to the mix.

But, my son is what we like to call a “peanut.” He is 48″ tall and weighs 53 pounds. If we were dishonest people, he’d be getting free buffets all over town. Not long ago, a women at a salon tried to play peek-a-boo with him.

In some ways, his small stature is a good thing. It gives technology time to make progress on his necessary heart surgery, I never have to spend money on new clothes because he wears the same thing year after year, and he can still fit in my lap and snuggle up for movie night.

On the other hand, if he hits puberty and hasn’t grown enough, he never will. So after some x-rays and blood work, it has been determined that he needs to see an endocrinologist at the end of the month.

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At this point, we only know there will be extensive tests and long conversations and walks on the beach with his cardiologist. He is the one doctor to rule them all. As we have before, we will put our faith in the hands of a medical team who we trust with making life-altering decisions for our little boy. No pressure, fellas.

And, in the end, it’s possible that our peanut will grow into a full-sized legume.

Day 20 – Centered

posted by Momo Fali on November 20, 2013

You know how the universe has a way of setting you straight? I used to constantly comment about the awful parents at the library whose children ran around and – GASP – didn’t wait their turn, and weren’t whispering, and didn’t color code their crayons when they put them back in the box after craft time. I judged everyone, because my kid was perfect.

Then I was sent a child with special needs who would change the order of all the books and pet the librarian’s double-chin if given the chance. Though, he might do that color-coding crayons thing.

Yin. Yang.

Our yellow Lab was rotten. She was cute, but she ran away all the time, ate all things inedible, threw up a lot, and had the world’s nastiest gas. Our black Lab won’t leave the yard if we forget to close the gate, won’t even eat the bones we buy her, and a few weeks ago when I gave her peroxide to TRY to make her throw up, her iron stomach held the contents firmly in place.

That’s 50/50 dog luck, right there.

Daisy5

Earlier today my boss left me the nicest compliment on Twitter. Her opinion is nothing to scoff at, given she’s a multi-award winning, cross-platform media thought leader; which includes her place on the list of FORTUNE’s 2013 Most Powerful Women Entrepreneurs. If you introduce her to someone in person, you need an inhaler because you’ll be out of breath from the accolades. Needless to say, this made my day.

I wrote her back and thanked her, then I stood up, tripped over my own feet, and fell flat on the floor.

Thanks for keeping me centered, universe. Thanks a lot.