Our Camino 2013 – March 28th – 30th

Posted on April 22, 2014 by curibe2014

Gus was in “remission” Easter of 2012. We celebrated the promise of that “new beginning” with an Easter egg hunt that had the kids solving mathematical clues and riddles to get to the big prize, a money filled golden egg. We took pictures of our three boys as usual, Gus there in the middle of his two much taller brothers, all smiles. I took a tentative breath and thanked God for another miracle. This time the miracle would not give us eight more years but just a few more months. Soon he complained of leg pain again. Soon he was back in chemo. Soon he was gone.

We planned to start “Our Camino” on Easter of 2013 not only because we could not bear to be home but because we were in-fact starting anew. Not all beginnings are happy and bright we’ve since discovered but they are beginnings nevertheless. A beginning we chose to greet with a saddened smile but a smile still in his honor . The following is a chronicle of our journey last year as originally posted privately to our closest family and friends (minus the grammatical and spelling errors). I hope it helps someone.

WE ARE WALKING – March 28, 2013

In just a few hours we will embark on “Our Camino”. We are likely over packed and under-prepared but excited and anxious. Why walk? After the year we’ve had why not just sit on a remote tropical island beach, staring off into the horizon sipping on fruity drinks? Because we can’t. In one of his first sermons after being elected Pope Francis said “Walking, our life is a journey and when we stop there is something wrong”. So we will walk. We will walk to try to move away from the pain of so much loss and towards the promise of our reunion. We will walk to honor the physical challenges that Gus endured without complaint or bitterness. We will walk to know that moving forward does not mean leaving him behind. We will walk because if we stop, we may never get up again. How appropriate that our “Camino” begins Easter Sunday.

Gus & His Nana – Both lost to us in June of 2012

Gus & his Great-Grandfather Juan who followed him to heaven in February of 2013.

WAITING TO WALK – March 30, 2013

Funny thing to say “waiting to walk” but we are. After almost twenty-five hours of planes and trains we arrived in Sarria (pronounced “sorry-uh”) early – very early Saturday morning. The train station, a smallish building that kind of looked like a house, was encased in fog just like in the movies. We were surprised to discover we’d been traveling with a number of other “pilgrims” who immediately took off on their journey. For a second we were a little embarrassed that our backpacks were inside the two enormous bags we dragged while they carried nothing more than their backpacks and that we were headed straight for our hotel while they hit the road after the long journey from Madrid. However, a quick whiff of myself got me over that bit of humiliation only to be replaced by the even bigger humiliation of just how loud two rolling bags can be over cobble stone streets. We are happy to report however that we do not appear to have awoken anyone (at least no one yelled at us) and that we were immediately given our room despite arriving far too early for check-in (no doubt they got a whiff of us too). We were able to take a nap, shower and eat before heading out to look around town and purchase our pilgrim shells. We will commence walking tomorrow because we intend to start walking refreshed and looking good!

Planning “The Way”

Posted on April 16, 2014 by curibe2014

Months before we sat across from each other picking out urns and niches, my husband and I sat next to each other convinced that we’d dodged another bullet. We’d just returned from San Francisco from a second round of radiating Gus’ entire body benignly called the “MIGB treatment”. It was not a painful procedure, just incredibly boring and uncomfortable for all of us. After receiving a high dose of radiation, Gus spent his time trapped behind a lead wall, while just outside his room, we sat on a padded chair that was provided and an office chair we stole, shoved into the corner of a small area between two patient rooms and the emergency exit. Gus’ bore his time with his usual good humor, chatting with his friends through his plastic covered i-pad and although we could get up and go at any time, we strapped ourselves into the chairs in solidarity. It might have only been ten days that we lived like this but when the time finally came to go, we pealed out of the parking lot as though we were breaking out of prison. Before we’d left, the doctor had filled our tank with hope. He’d announced that the “lights” (tumors appear on scans as lights) that once filled his body as though they were stars in the night sky had all gone out. Comforted by total darkness, we sped home towards a healthy future.

At home, we played what Gus wanted to play, watched what Gus wanted to watch and when we weren’t doing that – slept. On a rare Sunday that was not interrupted by cancer center check ups, we did what we used to do on Sundays, stayed home in our PJs and had a “lazy day”. Gus tired himself out that day trying to “prestige” on Call of Duty and went to bed early. For the first time in months my husband and I sat down to watch a movie of our choosing. We chose “The Way” with Martin Sheen and Emilio Estevez, a movie I’d picked but had not had a chance to watch. We almost turned it off immediately when in the opening scene the son, played by Emilio, dies sending his father, Martin, off to Spain to pick up his body, but we stuck with it because there was something alluring about all that walking. As a semi-practicing Catholic, I’d heard of the Marion sites like Lourdes and Fatima and seen the pilgrims arrive on their knees at the Basilica of Guadalupe in Mexico City, but I’d never heard of a pilgrimage to Santiago de Compostela and when the movie was over, my husband and I promised each other that when the boys were gone we’d go on this pilgrimage ourselves. I wonder sometimes if we’d not said that out loud if the future would have unfolded differently because what we didn’t know then was that Gus would leave us on different Sunday. As it was six months later, with Gus’ passing and the older boys on their own – our boys were gone…

We began flirting with the idea of doing the Camino again. It was just a thought at first that took root and seemed to be confirmed that the universe was pushing us to do it by everyone we met. We met a man who would be doing it on bike in October and another who said he had a friend who’d done it and others who were thinking about it themselves. By December of 2012 we’d decided to walk the Camino for Gus starting Easter of 2013. I should mention now that Gus was not our only loss that year. On June 14, 2012 just ten days before our Gus, his grandmother Robyn Deppe would leave us a victim of lung cancer and seven months later my grandfather would join them after a long bout with Alzheimer’s. Walking became a necessity.

If we were going to walk 135 miles in ten days from Sarria to Santiago de Compostela and then on to Finisterre we would need the right gear and lots of practice. We went to REI for backpacks, shoes and clothes. We practiced walking first up and down small hills, then on and around hiking trails and finally on two consecutive days just to get the feel for it. We took Gus’ prayer cards with us and left them everywhere we could. For Christmas that year, my brother-in-law made us little crosses with Gus’ name for us to leave on our trails and my sister gave us a pack with the words “Live for Gus” stitched in yellow. When we boarded the plane on March 28th last year bound for Spain, we wondered if we could do it. Could we actually walk thirteen miles a day over ten days? Over the next couple of weeks I will reprint the blog that was originally published just for family and friends. It is hard to believe that twelve months have passed since we walked the Camino.

Gus at Will Rogers State Park

Gus at Temescal Canyon

Gus at Cobb Estate

Gus at Runyon Canyon

Live For Gus Bag

Gus Crosses

Spinning away.

Posted on April 8, 2014 by curibe2014

Here I am waiting for my hour-long spin class. The class is not normally held outside but that day it was and I am not sure why. The class is already brutal with us alternating between standing and sitting while pedaling fast or slow to the beat of the music, so having it outside in front of everyone on that particularly hot afternoon was humiliating torture. Having finished with “the Great Purge” (or rather stopped by my family when they found me dragging the couch out) and with nothing else to do at the “sad” hours (the hours I should still be with Gus) I spin away.

I took up spinning when Gus was in the first grade but not with this kind of rigor (at least four times a week currently). By then, I’d gained a lot (I mean a lot) of weight. It had crept on slowly, almost imperceptibly in a conspiracy with my mirror and aided by my over-self esteem. “I am tall and wear my weight well” – I told myself. The truth was that I was fat. There were reasons for this – legitimate ones – completely understandable. First among them, was that my legs really hurt when I exercised. I’d been a basketball player in high school and even then when I was at my thinnest my legs hurt – actually burned – when I ran, walked or even bicycled. The doctors had no explanation other than suggesting that I drink more water and then later – to lose weight (it is kind of difficult to exercise when your legs seize up). Then there was the stress of having two kids while still in college (architecture school no less) followed by the stress of buying a fixer-upper house. When Gus was born, the older boys were twelve and ten, at the height of their million activities and I had no time. I liked to sleep between working full-time, the kids’ sports activities, fixing the fixer-upper house AND a new baby. The added “baby weight” settled in nicely – everywhere. Then Gus got sick the first time and I ate nothing but fast food for the entire year he was in treatment. I ballooned into a 287 pound fatty.

By the time Gus was in kindergarten, I no longer thought I could look good. I just accepted my “curves”. Then little Gus would sit with me when I combed my hair, read to him, watched TV or made dinner for the family and staring into my face say “Mom you are so beautiful”. Then, turning to his brothers who were in high school and never so much as looked at me, added “just look at her face! Isn’t she beautiful?” One day he added to the “Mom, you are so beautiful”, a “but maybe you could get smaller” with his little hands gesturing that my circumference could shrink. Knowing full well what he meant I responded “Gus. You want me to get shorter? I can’t. I am tall.” He’d walked away shaking his head.

There is an odd kind of vanity in sharing that my son thought I was beautiful. Sort of pathetic. Didn’t her husband think she was beautiful? Didn’t he tell her? Don’t all kids think their mothers are beautiful? I suppose so, but until Gus, my other sons had never considered what I looked like – or if they did they’d kept it to themselves. And while my husband often told me he still found me beautiful, I was fat and therefore I thought he was just being polite or in need of something. Sex? Unconditional love? Trying to get out of trouble? But Gus already had my devotion and if anyone should have ignored me it was him. He who had already been through so much should be the last person concerned with my looks or health – he should be singularly focused on himself and his needs. He was the baby, the one that had been so sick, the one we all doted on. But Gus was not like that – he was always very aware of others.

I resolved to be the person Gus saw and do exactly what he wanted – “get smaller”. I eliminated the pain in my legs with NAET (Nambudripad’s Allergy Elimination Techniques – look it up it works) and acupuncture. I started walking and then I discovered spin. That first day on the bike, rubbed raw you know where, my legs felt rubbery and I could barely make it back down the stairs but I was hooked. Cycling indoors to music? How can it get any better? Over the next two years I lost fifty pounds. But then Gus got sick again and I gained some of it back (almost twenty pounds).

I don’t think anyone would have blamed me if I’d gained all the weight back and then some. I’d lost my precious baby boy. But then one day, as I wondered what more to discard, I remembered Gus sweet face. The sweet face of the little boy who thought I could be better. The glowing face of the slightly older boy who’d lost his final battle with cancer but was no quitter. He’d endured his treatments with a smile, constantly comforting me – “Mom, don’t cry I’m fine”. So I got back on that bike. I’ve lost the sixty pounds so far – with another thirty to go. Gus’ mom is no quitter either.

Me & Gus just before he got sick the first time.