Live Laugh Love

Gus passed away in the early hours of a Sunday towards the end of June. At first we went home and tried to sleep. Then we tried sitting at my parent’s house only to find ourselves staring at the walls. Then we realized it was only 9:30 in the morning and we could make it to Mass. So we did. That is what I remember concretely.

Then I, who’d just a year before rejoiced that he’d been in remission for eight wonderful years, retreated to a place within myself and went quiet. In my place was a strange woman able to evaluate choices, make decisions, sign papers and even produce a memorial video with music. What a fraud. Who was that woman pretending to be me? She accomodated those that wanted him cremated as a final act of revenge on the body that failed him so miserably; those that wanted him buried quickly so as to not prolong the torture and those that needed to celebrate his short life. I could not have done those things. I was in shock…numb. I had been deceived by a medical team who failed to predict this terrible turn and a God that dangled his “cure” in my face just to pull it away. I was not there.

She did pick a beautiful urn, I noticed. A rectangular stone box with the sillhouette of a what looked like a little boy dancing who then transformed into a bird and flew away. Although the precise niche she picked was hurtful. Didn’t she know that I made the arrangements to place the Jesus statue on that niche base? And then installed the skylight over it to protect it? That is what I DO at the Archdiocese. Gus would have thought it was funny though, to be placed there behind Jesus so he could tug on his robe. Then, just a week after racing his dad across the parking lot of that hospital who swore he’d be cured if he was in remission for five years, the woman picked up Gus’ urn from a sun flower laden table at the conclusion of the private family service. Cradling him in her arms, she processed across the parking lot into the vibrantly lit atrium and gently laid him in his niche with the promise that one day he’d be flanked by his parents and grandparents in eternity. I do praise her for leaving his favorite X-Box controller in the niche with him so he’d have something to play with and the signed pictures of the family so he’d remember us. Is one even allowed to put extra things in niches?

A few days later, during the standing room only public memorial mass, a friend offered my family their house in Mammoth for a few days and this woman accepted. She, my husband, my two older sons and even the girlfriend (I would have never allowed that) climbed in the car, the same car where Gus dropped a nickle in the front passanger window that still rolls around to this day and drove eight or so hours north. The pictures suggest that she walked in the woods, had a decent meal and may have even followed the car’s GPS through a mistaken but memorable trek through clearly un-driveable areas amongst the trees in search of some ever-elusive craters. I was glad that I was not there because I would have noticed that it was summer and that all the vacationers seemed to be families with ten year old boys. I would have been offended that the girlfriend sat where Gus would have been sitting. I would have noticed their return from the Mammoth trip was on a Sunday.

It has been a one year, eight months, twelve days and nine and a half hours since we lost of youngest son, Gus, to his second battle with a neuroblastoma in his short but well lived ten years – but who is counting. I should state at the outset that we were lucky? blessed? fortunate? (no word seems right) that neither of his two battles with cancer were terrible as weird as that sounds. Both times, the first when he was two years of age and the second eight years later, he did “well” with all of his treatments – chemo, radiation, and stem cell transplants. Yes, he lost his hair and he lost tons of weight but he was always in good spirits, happy, calm, above it all in a manner that was truly beyond his age. He seemed to have an understanding that there was a distance between body and his soul so much so that one day as he was being pumped with whatever was required that day he’d said to me “I’m sorry Mom, but this body is no good.” As we watched our brave little boy with great awe, admiration and helplessness endure his treatments I asked God for two favors – the first of course that he be cured and the second that if it was not to be to never make me tell him he was going to die and then to make it quick and painless. God granted me the second.

Just before he died, early Sunday June 24, 2012, after a second five-day round of intense chemo for the second relapse in less than nine months, August Deppe raced his dad from the cancer center to the car -beating him as usual -for the last time. He woke up the next day with a stomach ache, the beginning of septicemia, which would take him from us in less than twenty-four hours. More than fifty people visited him that day and about thirty stayed with him, taking turns massaging his feet and holding his hand until he took his last breath. The ICU doctor said he’d never seen so many people for such a small child and speculated that he must have been very special. He was. Kind, happy, hopeful, spirited, generous, thoughtful, courageous, brave, amazing – even death could not rob him of his inner light – on his face a final peace and on his lips a little smirk that suggested he’d taken a great secret with him.

I have always been a happy, optimistic – find the silver-lining kind of person but that day I wondered if I would ever stop crying. Gus was the heart of our little community, his class and our family. While a mother is never supposed to have a favorite, there was no way for me to help it. Everyday he’d ask “How was your day Mom?” and I’d answer “better now that I am with you” and we’d hug each other and tell each other how much we loved each other – he was just that kid. With his passing, the silence in the house was deafening and the busyness that had kept us swirling around him abruptly stopped. We had difficulty looking forward to the next hour let alone the next day, month, holiday or year. We’d had so many plans but all of them had included Gus.

This blog is about the diversions, distractions and motivations (the upsides) that are helping us live each day for and in honor of our son Gus.