Knocking on Heaven’s Door – Part Four

Posted on September 4, 2014 by curibe2014

Always smiling

I have no doubt that many readers will find a million ways our meeting with AJ Barrera was a complete farce. We are after all grieving parents eager for evidence that our son is not really lost to us. Even I can point to the many times we offered up unsolicited information. However, there is no way AJ could have known about the collie, the location of Gus’ memorial shelves in our house, the memorial plaque at his school (see below), that Gus would poke fun at his relationship with his oldest brother (see below) or that he would take credit for the music that fills his other brother’s life now (see below), not to mention accurately describing the personalities of all the other relatives that made an “appearance”. But the reading was even more than that, hitting nearly every aspect of the difficulties and questions we had not even had the heart to talk to each other about. For example, until the reading, my husband had been incapable of venturing into the backyard, especially where the wagon was hiding directly across from the swing set. It was there, at the bottom of the slide, that he and Gus had last spoken, having a heart to heart about life as Gus enjoyed the sun warming his bald head. For my part, I was wondering if he’d woken up on the other side disappointed that he was no longer with us. I could almost hear him say, “Aw Man, I’m dead…”. I worried that it was my fault for not giving him the stem cells sooner, that I had missed something that would have kept him alive. It gave me great peace to know there was nothing I could do to prevent it and that he had been in control of his leaving and was ready for his transition. We left the reading with the knowledge that Gus is not just in our hearts and memories but that his spirit is actually still with us – we only have to be open to the signs. Like our walk in Spain, our reading with AJ was trans-formative. Since then, Gus is as present in our lives as ever and we are practicing living each moment with more presence and openness. Life can be truly magic.

Final reading segment:

AJ: I might misinterpret this….is there….I actually want to drop it down younger. So I want to drop it down to your younger energy and I rather be wrong on it, but is there actually like a mural or either some sort of engraving or some sort of writing that you had done in honor of your son that I have to bring up here?

Us: Yeah..

AJ: Where is this if you don’t mind me asking?

Us: It’s a memorial plaque at his school.

Memorial Plaque at Gus’ school.

AJ: He wants to let you know…” thank you for honoring him and thank you for doing this” because there is a part of it that is written and it’s engraved and there is a part of it that he wants to let you know, it’s his way of waking up and being a legend because he is a legend on the other side because he is known on this side, there is like a superhero type of energy, that he is still strong and not fighting this but still the main guy on this side. Is there a reference to him like just being like honestly a character?

Us: Yeah..

AJ: Because part of it like he is making me feel like “I am not sick, look, I’m not sick”, part of it like I’m alive, I’m happy, I’m having a good time and his energy for me is about kind of making you guys happy and making you guys laugh because I feel like his energy, when it was here physically was kind of to make you guys happy and make sure mom and dad were ok, it wasn’t for you guys to make him up, you know what I mean? I feel like his duty was to assist you and help you guys out as well, he’s also bringing up for me, do you actually…and this will sound very unique, you don’t have his jacket with you do you?

Us: Not with us for today, no.

AJ: Do you carry his jacket around? Why would he bring up his jacket?

Us: His sweatshirt is hanging inside his room and I grab onto it every day.

AJ: He wants to let you know that “I’m there with you when you do that”, “I’m there with you”, because he is making me feel like I need to acknowledge the jacket or the sweatshirt he is identifying with you and he wants to let you know I am still there for that event, I am still part of your life, because his energy, again, he is alive, like spiritually, he’s like right here, my hair is just rising, he’s a vibrant energy for you guys again, it’s not about the medium it is truly about you guys of understanding of why he wants to come across to you guys, it’s about making sure that mom and dad are ok. They are also bringing up for me like when this energy….. did you say your mom passed on the fourteenth?

Us: Uh –hugh.

AJ: Then there must be another reference to this, because flag day is like June 15^th, so is there another significance to a governmental holiday, that I need to bring up for you guys?

Us: This morning, the cub scouts go put flags on all the graves for Memorial day.

AJ: Are you guys doing an event?

Us: I haven’t done it the last two years, today and last year but we did every year since he was born with him as a guy in a stroller, or as a cub scout.

AJ: Have a party for him, he is going to be at those events so if you are placing the flags, he wants to acknowledge that I will be there with you guys, so enjoy the moment, enjoy the time with him and even though spiritually he is around you guys even though physically he is not, there is part that he wants to let you know I am still a part of your life today as well, because when I look into you guy’s energy, he is making me feel like, you guys are a team, you are a whole, you guys are a backbone, so I don’t feel like one is weaker than the other I definitely feel like you guys balance each other where you guys are at, but his energy is like I just want to step forward and be this true energy for you guys as well. Why? Is there a weird reference…..do you guys have ties to Orlando? Like Florida?

Us: We took him to Disneyworld. I have some relatives there. We went there twice with him.

AJ: It’s something one step further. I don’t think it’s just Disney. Or two I need to call him by a different name. So would he go by like Dopey, Sleepy, Goofy or something like that? Is there a name that I am actually supposed to bring up here? To acknowledge him, or to acknowledge one of you guys? I feel like it’s a funny, haha, reference that he wants to acknowledge because I don’t think it’s just making the trip to Disneyland because I’d actually see like Anaheim but I feel like if you have ties to Orlando, then I feel like in some sense I need to acknowledge Disneyworld or maybe the name of something. There is something they want to bring up here, like it’s a name.

Us: We used to call his brother Grumpy.

AJ: That makes sense, his brother?

Us: Yeah.

AJ: Your brother?

Us: No, his older brother.

AJ: Still call him Grumpy. Let him know he is still Grumpy from the other side, because I feel like I need to acknowledge him, and need to acknowledge like the name the character, and was he close to his brother if you don’t mind my asking?

Us: Yes.

AJ: Because I need to acknowledge him in a joking way, like bust his chops and let him know that I still want to feel like the brother energy. But he is making me feel like he’s the better half though. So kind of like tease him with that, so he makes like he was known for that and even though parents don’t have like a favorite child, there is a part of him like he is the better one. So I feel like it’s his way of teasing him in a unique way because he’s making me feel like “I still have all the attention” regardless. So I feel like it’s that type of energy of how he wants to step forward for both of you guys, you know what I mean? And I feel like the energy of him is just to be funny. It is truly just to be funny and remember him how he was like today as well. Now is there a separate energy, like on you guy’s level that is like a male that is passed over? When I say your level I mean, brother, cousin, friend.

Us: No – we don’t think so.

AJ: If not then I might be switching over……. AJ does switch over after all this time to another person in the group but Gus was not done. After speaking to another woman for about twenty minutes, AJ turns back over and says…. Why is your son bringing up music? Was he a musician or why is he bringing up music?

Us: No. Our middle son is really into music all of a sudden.

AJ: Your son is bringing up music. Like he wants to let you know… like I am seeing musical notes. Like when I am talking to her, he just threw music at me. So I feel like it’s almost like he is not done, you know what I mean? So I feel like he wants to jump in so I feel like of how they want to jump in just to acknowledge the energy. They often do that just to get like the little messages across but I feel when your dad steps forward I need to acknowledge the signs and signals, so I feel like he is going to be inspired, like your son is inspiring your son now as sending the music across to him.

Our Camino – Final Thoughts – April 12, 2013

Posted on June 23, 2014 by curibe2014

Buen Camino

We took a bus from Finisterre back to Santiago de Compostela. What had taken us four days to walk was covered in less than three hours. The landscape looked different from the confines of a bus and as we rode along we thought about how the Camino had affected us.

When we planned the trip, we doubted that we could make it from Sarria to Finisterre, we wondered if the pain in our hearts would amplify the inevitable pain in our legs, leaving us stranded in the middle of Spain. We were angry, secretly demanding that God explain himself via burning bush or a hand written apology, however we’d settle for a glimpse of Gus, walking along with us, maybe just slightly ahead. It was crazy of course but this particular “Camino” was a religious pilgrimage so why not? There were no notes of course and the ground was too wet for bushes to burn, even miraculous ones, and all we were ever saw were cows but as we walked, we marveled at how much the journey mirrored life.

There were ups and downs and whole areas of mud and sludge that threatened to bog us down. Forward progress went smoothly when “all water was under the bridge”, keeping us stagnant when it was not. We’d proceeded carefully trying to avoid all the “crap”, while others simply stepped in it, but more often than not the “crap” found us anyway.

We thought about how easily we had faith in odd things, like Ewan of MacAdventures (not MacTours) to whom we entrusted our money and personal belongings, not once worrying that our hotels would not be booked or our things would not be safely kept ahead of us; and that the Camino markers were official, always taking us where we needed to go even when they were spray painted on the road; along the side of a house, or a tree. Our struggle with faith therefore was not that we did not have it to throw around but that we had to keep it, even now, when things had gone horribly wrong.

The road to the end of the world was by far the most difficult part of our journey, but just when we wrestled with the idea that leaving Gus rocks, crosses and pictures was pointless and only adding to our misery, we’d met Andrew and Chris who lifted our spirits and were surprised to discover it was us who’d left the amazing rock they’d seen on their way out of Santiago after their own happenstance meeting.

We do not return ready to empty Gus’ room (if ever) or with any more clarity than when we left, but we proved to ourselves that we are stronger than we imagined having walked an average of 20km per day for ten days much like we’ve gotten up everyday since 6-24-12. The Camino has given us some peace knowing that while we will always love Gus and will miss him more with every passing day, we can walk in this new world. Buen Camino.

Until we meet again Gus.

Rock On Baby!

We are on our way.

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.

Me & Gus’ after his first bout with cancer.

Me & Gus – after I discovered spin.

Me and Gus during his second battle.

Me now – sixty pounds lighter.

See Gus – Mommy IS smaller!

Grief – an upside?

Posted on March 13, 2014 by curibe2014

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.