Lucas Camilo

This morning we went to the funeral service of a little girl who touched many, many people in her three years of life.  Lucas and Mari first met last summer through a common therapist.  They hit it off immediately… in their own way.  Both were stubborn as could be and a little reluctant to be surrounded by parents trying to get them to interact.  But eventually they read the Maurice Sendak story Pierre aloud together and repeated the refrain “I don’t care!” will glee.  Later Lucas repeated Mari’s name many times and relayed the fact that she also used a special chair like him.  We heard from Mari’s parents that she would often ask “how’s Wucas?”

The last time Mari and Lucas hung out was at a event with the Reptile Man at our local community center.  Lucas was scared as hell of the snakes, giant turtle, lizards, etc… but Mari had seen it before and bravely rolled up in her wheelchair to touch some of the reptiles.  Lucas, admiring or perhaps envious of Mari’s example, eventually followed suit… and loved it.

Mari was born just a few months after Lucas and had a similar – but also very different – neuromuscular disease.  Spinal Muscular Atrophy (SMA) doesn’t start off nearly as acute as Lucas’s myotubular myopathy, but it is degenerative and the weakening of the muscles is relatively rapid.  Unlike Lucas, who has never expressed any dismay or even acknowledgment of his disease, Mari did not like being disabled.  She was extraordinarily smart and self-reflective and was frankly pissed off that she couldn’t do a lot of what other kids do.  We didn’t get to know her that well but her feisty personality is totally unforgettable.

We both cried a lot at Mari’s service, mostly because it was a sad but also deeply moving to hear about a little girl who had such an amazing impact in her short life.  We also cried because we imagined that it could have been Lucas.  Last November it almost was Lucas.  And we couldn’t help but feel ourselves there in Mari’s parents seat.

For a variety of reasons we decided not to bring Lucas to the service.  He stayed home with a nurse, and when I (Burke) got home and Lucas was waking up from his nap, I shared with him the bookmark with Mari’s picture and a quote, something she said shortly before she died: “I want to be a butterfly, and fly into the sky, won’t that be nice.”  I tried to explain that he wouldn’t get to see Mari again, that she had gone away, far far away.  He grasped the picture in his hands, stared at it for a while and then finally said “put it on the wall.”  So we did.

Here’s Mari’s obituary in the Seattle Times:

Marielle Haley Scott, beloved daughter of Jamie and Maya Scott, died January 17, 2013 surrounded by her parents and grandparents. Mari came into this world on a cold clear day in Oakland CA on December 7, 2009. She was beautiful and perfect and had a spirit that drew people to her from day one! Mari was diagnosed with Spinal Muscular Atrophy at six months. Mari loved sunsets, which she referred to as “hallelujah skies”. She loved books, bunnies, tea parties, Cinderella, and her service dog “Kudo”. Her dreams were to be a ballerina and to ride a yellow skateboard someday. We picture her in heaven zooming down the streets wearing a tutu and riding a skateboard. Mari leaves many who mourn her passing: grand-parents David and Mary Ellen Haley and James and Marilyn Scott, great grand-parents Gene and Clarice Slade, aunts, uncles, cousins, and friends throughout the world!