The Adventures of ALS Boy

A middle-school math teacher documents his joyful life while battling the evil forces of ALS.

Holiday Cheer

Candy cane not included

'Tis the season to share with you some of Emma's latest triumphs exploits shenanigans. Enjoy.

Emma took the lead in decorating our Christmas tree this year. At first, Fehmeen and I thought we would just leave it as was but we quickly changed our minds when we noticed that one branch in particular was supporting no less than a dozen ornaments. Fehmeen quietly redistributed the crowded and low-lying decorations to other less densely populated areas of the tree while the Bug was distracted by visions of sugar plums dancing in her hot chocolate.

"Jingle bells, jingle bells, jingle all the way. Mumble mumble mumble one horse open sleigh, HEY!!!" Repeatedly sing this exact phrase without stopping for at least three or four minutes straight with the emphasis on the HEY and you too can feel what it's like to be an adorable two point seventy-five year old around Christmas time.

Most evenings after dinner Emma and I find ourselves engaged in the fine art of conversation. While sitting on our toilets. Me on porcelain, Emma on plastic. We laugh so much that Fehmeen always comes in to make sure that we are all right. The family that drops deuces together, stays together.

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This was the year that our daughter overcame her paralyzing fear of shopping mall Santas and sat on one's lap. Mommy and Daddy were not there -- Nani and Nana took her -- but we do have photographic proof of the landmark event. I promise to post the picture on this site the day after Christmas when we get my new scanner up and running.

Two days ago, Emma asked Fehmeen to smell her hand. Once she obliged her, Fehmeen wanted to know why. Emma said, -- and this is a direct quote -- "It smells like my butt, Mommy." Apparently she got the idea to put her hand in her butt and have somebody take a sniff of it. Stifling a laugh, Fehmeen told her that it was not funny. Unfortunately my ALS symptoms prevent me from holding my poker face together when they recounted the story for me. Sorry but I think that is pretty darn funny.

And no, I didn't let her watch the stink palm scene in Mallrats.

 

Jason Picetti lived life with ALS by six simple words: Speech and movement compromised, spirit unaffected. He died on October 2011.

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