King of His Jungle

Add one more nick name to the list for August. In addition to Gus, Augey, Gus-Gus, G-man, Gusto, Augs, and Gussy, we now have The Lion. It couldn’t be more appropriate.

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Gus still aspirates when he swallows liquid that isn’t thickened. (Unthickened liquid seeps down his wind pipe instead of heading to his belly.) In the short term, he coughs and wheezes bubbles until the liquid clears. The long term risk is the potential for a pneumonia if any liquid remains in the lungs. Knock on wood, we haven’t encountered that situation to date.

Three specialists follow Gus’ swallowing issue: the ears/nose/throat (ENT) doctor, the gastroenterologist (sp?), and the pulmonologist. Up to this point, no one has been able to see anything wrong in his epiglottis (the valve in your throat that closes for food/drink or opens for air) so the conventional wisdom has been that Gus’ low muscle tone is the cause for the aspiration. Despite Gus’ excellent progress in physical therapy (THE WIFE tearfully captured his first official steps on video this week,) his posture is still slightly frumpy when he is at rest which makes sense considering he isn’t walking full-time yet.

During our last ENT visit, the doctor confirmed that Gus still has an accumulation of fluid in one of his ears. As many parents of kids with DS predicted, the doctor recommended that Gus receive tubes. In addition to significantly reducing the risk of ear infection, the absence of fluid in the ear should also help to maximize his speech development. Of course, we are on board even though it means putting our little Lion under anesthesia. Since Gus will be sedated already, the three specialists will also use the opportunity to look at the epiglottis and take tissue samples for various other tests. The procedure is scheduled for May.

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At night, when we’ve finally made it to eight o’clock, Greta goes to bed first. THE WIFE or I or both of us will serenade her with good night songs of her request (usually Twinkle, ABCD, or Doe a Deer.) G-man pulls himself up at the side rail of his sister’s bed, and rocks his body side to side in rhythm to the song. We say our goodnights and head downstairs to the living room.

Gus sips on his thickened milk as we breeze through an episode of Jeopardy. He sometimes claps when the audience applauds a contestant who has swept a category. Or he crawls around on all fours with a sippy cup dangling from his mouth. When the familiar anthem of Final Jeopardy plays, G-man again busts into the side to side dance.

At last, the middle child is hypothetically ready for bed. We sign “I love you” to his mommy and his baby sister. We blow kisses. He usually sticks out his tongue and raspberries towards THE WIFE and Tilly. I head upstairs and deliver Gus to his crib. Then I return downstairs. This is when the new nick name was born a few months ago.

Sometimes, Gus will go to sleep right away. Sometimes, he does not. On the latter occasions, Gus will periodically roar as if upset because we have caged the Lion and he still wants to play. The roar will continue intermittently for the next thirty minutes. THE WIFE and I just giggle and shake our heads.

Every once in a while, I will peak my head into The Lion’s den. Usually, our little king of the jungle is standing at the crib, dancing his side to side dance, and laughing towards the night light that casts shadows of his movements. I jokingly accost my beast for not being asleep. He barks at me in reply with a short laughing yell. I lay my Lion down but usually he is back on his feet at the side of his cage before I’ve exited the room.

I rejoin THE WIFE on our couch and we listen as the Lion chats, laughs, and roars with less frequency until he finally goes to sleep.

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Sometimes I bristle when someone talks about how kids with Down Syndrome are wonderful. The generalization is of course intended to be a compliment. And I don’t necessarily disagree. I think I understand the commenter’s intent. But the statement is too broad for me to just accept silently without comment.

Gus can be a fresh little boy who scratches his older sister’s nose, gouges his daddy’s eye ball, and yanks on his mommy’s hair. He spits out his medicine, oftentimes directly into my mouth or face. He’s a mischievous little devil who will make a break for the open kitchen closet door the second his parents let down their guard. When left alone in a room, the wrecking ball will tear apart anything within reach: drawstrings from blinds, electrical cords to appliances, his baby sister’s pacifiers or bottles, an unguarded potty, etc.

Notwithstanding his bouts of occasional misbehavior - like any typical boy - August is wonderful. While his resilience and resolve against the diverse challenges that accompany his diagnosis impress me every day, his essence as a person is not defined by Down Syndrome. He is our happy boy who laughs and plays, hugs and kisses, dances to the beat of Final Jeopardy, and roars aloud when it’s time to go to sleep. At least within our circle of loved ones, we celebrate that he is atypical. We wouldn’t want him any other way.

Besides, what would you expect from someone with the heart of a Lion?