Smile time’s a comin’

Shade sporting the Tarantino Suitcase, a hitman’s goatee that we had to fill in with Sharpee to connect the stache to the beard. Universal policy. It lasted about a week until Aitza put a stop to it because all his white sleeves were stained gray from where he wiped his face on his sleeves. Doh!

Shade is embarking on a new journey. This is sailing across the uncharted Atlantic to search for a new world. We’ve booked a surgery for him. Nerves harvested and grafted. An electric journey across his face. It’s going to do wonders for his smile.

On Thursday, at 2:30 PM EST, March 29, 2018, we travel from Orlando to Raleigh-Durham for Shade’s appointment with Dr. Jeffrey Robert Marcus, MD of Duke University. He’s one of the top Plastic and Reconstructive Surgeons in the country. They did various scans and tests and determined he was a good candidate for a nerve graft. Of course, I told you all this on the Facebook post for his fundraiser so sorry to be redundant.

So this Friday, he’ll be prepped for surgery. After he’s under, Dr. Marcus will remove a nerve from his calf and graft it from his left cheek to his right. They go in under his lips and insert the nerve.

They’ll also lifting his right eyebrow and lower eyelid. It doesn’t close properly and tends to droop, causing his tears to run out and his eyeball to dry. It’s painful and we have to constantly keep his eye lubed and taped at night. The stitch will pull the corner of his right eye up so it holds the tears and potentially allows him to close his eye.

Then comes the recovery period.

I’ll keep you all informed about Shade’s Progress during this procedure. Here’s to symmetrical smiles and blinking eyes.

Dr. Jekyll/Mr. Hyde

Shade still walks the hormonal tightrope between little kid and mopey teen. I think Robert Louis Stevenson must have thought up his Jekyll and Hyde characters at the age of 12.

Last week, for example, I had just helped Shade into Aitza’s car so she could take him to school. I decided to hose off some built up dirt from the car (I had borrowed her car for camping) and as I slooshed the sides, some water leaked into Shade’s door. He was yelling at me through the window but I thought he was just pulling faces for fun. Little did I know, I had awoken the kraken. When I went in to kiss him goodbye, he pushed me away and yelled, “Get away from me!” I was flabbergasted. I didn’t know why he’d done that. I was very upset and stormed into the house. Aitza came out and explained to him that I didn’t know he was getting wet. I came back to the car and he let me kiss him goodbye, but he knew I was hurt from his rebuke. On the drive to school, he started crying. “I don’t know what’s happening to me,” he said to Aitza, who explained that not only was he trying to heal from a brain injury but he was simultaneously going through the biggest change of his life — puberty. There couldn’t be a worse period in a person’s life to try and heal from a hemorrhage in the skull box. Puberty is hell without any help from medical distress. It completely ruins the awesomeness that is being a kid. Plus, all that new unwanted hair! By the time they got to school, both of them were crying.

Switch to today. Shade has been obsessing about getting a Lego kit of a kitty cat. Note: There is no Lego kitty cat kit. But supermom Aitza did her due diligence and found some Lego nerd that built a yellow cat head/bird house. Shade nearly bounced out of his wheelchair when he saw it. He’s checked it out every day since Aitza showed him. So Aitza promised to take him to the Lego store at Downtown Disney and see if they could find the parts. When they got to the store, Aitza asked a Lego grunt behind the counter about building a cat head. “Um. Hold on,” she replied. “We’ll have to call a master builder.” She got on her Lego phone, gave the secret code phrase (F#@% Megabloks!) and a hidden Lego door opened in the wall. From the darkness, amidst billowing smoke and zipping laser lights, strode a master builder donning a red velvet cape and Lego centurion helmet. (I wasn’t there, so I’m filling in a few of the extra details as I imagined it happened. I’m sure I’m fairly accurate.) Anyway, the master builder took a look at Shade’s Lego desire, called some of the grunts to him, and began to order them. “I need twenty yellow number 3Fs, fourteen black 22Gs, eighteen white 47Bs, a eight Double Ds, assorted colors, and a Red Bull.” (The grunts were doing the leg-o work. Haaaaaaa, uh.) He started constructing the cat head for Shade before their eyes. According to Aitza, tourists actually crowded round to watch, including a large Brazilian tour group who were snapping pics throughout. When the blur of the master builder’s hands had subsided, Shade was handed a beautiful yellow kitty cat head. More pics were snapped. Now, normally when purchasing blocks, you fill a cup full of Legos and buy the cupful at a set price. This kitty cat project had multiple large cups involved, plus labor, but the master builder took it to the register and said in a deep commanding voice, “Just charge them for one large cup.” $15 was the total. The master builder then hopped on his Lego horse and galloped off toward Pleasure Island. Just before dipping over the horizon, he turned and waved. Aitza and Shade never did get his name.

So Shade is floating on a happy Lego cloud. Today he’s like a six-year old on Christmas day. Tomorrow he may be a surly almost-thirteen. At which point, I may suggest, “Lego store?’