We are now entering the fourth week of enhanced community quarantine and the things to do at home are becoming uber repetitive.
For the first time in my entire life the Holy Week felt like months. I didn’t even realize that last week we already had Holy Monday that dragged on to Maundy Thursday. This COVID-19 pandemic just erased that distinction between regular weeks and the Holy Week.
Times like this creativity is a survival tool. Like yesterday Easter egg hunting was all in the confines of our house. Wifey hid plastic eggs where Marcus in his wheelchair can access and find. I think he enjoyed it, the dollars and pesos stuffed inside the eggs made his experience better which I think he got enough to afford himself a new Xbox game, Kerbal Space Program, and some extra amount to spare.
Last year’s bunny got out of the pile of plush toys. Wifey’s Easter Sunday idea.
Also the first this year was Marcus taking a seat in the dining area. If I’m not mistaken, last time he was here was New Year’s Eve when we posed for our mandatory celebration picture. What got him there this time was the interest in helping prepare spring rolls with his mom. There were some challenges getting his hands up the table but with wifey’s assistance he made it and he ended finishing two spring rolls.
Marcus preparing veggie spring rolls.Our simple Easter Sunday lunch which includes the spring rolls Marcus made.
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Mood: 2/10 Honks! (Drafted while waiting in line in Shopwise Sta. Rosa.)
Last night one of things I made sure I discuss during our meeting was to set expectations why I would wear masks whenever I sense someone is sick in the room. It seems like a trivial concern to most but not for families with kids who could easily start to get sick, or even worse (God forbid), just because of a mere common cold.
Our son Marcus is among these kids. Since we learned he has Duchenne Muscular Dystrophy (DMD) we have been more careful. I myself turned germophobic (I can see my sister clapping, proud) just for this reason. Our house is never without alcohol, disinfectant spray, wet wipes, and surgical masks–there was sort of panic when Taal erupted and the supplies of masks ran out for days.
People see me and my wife strong but every now and then we would talk silently, not wanting Marcus to hear, about our fears sentiments, and frustrations. Having someone with a rare and progressive disease is a challenge physically and mentally but it is a good thing to see that the awareness is spreading–thanks to support groups and social media.
While we wish the cure for DMD becomes available soon, the reality is it won’t happen in our lifetime. Right now we just have to face this head on and pray that as the condition worsens we get stronger and more prepared. Keep us families with members who have rare diseases in your prayers and we’d be better.
Okay, enough of the drama, Marcus wants to play Call of Duty.
Marcus caught cold this week and still recovering. Here we are inside his room pausing from our Netflix’s Formula 1 viewing
Marcus still surprises us every now and then. Wifey and I were talking about how my work was while on our way to the mall last weekend when Marcus heard the part that I ended the workweek creating a Christmas box with my direct reports.
Curious what the box is for, Marcus asked, “What’s going inside the box?” I told him that my manager plans to sponsor a foundation for kids with cancer this coming December. Then he probed once more, “What’s cancer? Is it infectious?” I struggled to find a simple definition but I got past it. Marcus seems to have digested my explanation. “Daddy, you can donate the Xbox,” he soon replied.
I wasn’t expecting such response. He was referring to the Xbox 360 that we just pulled out and put up for sale online days ago. He was planning to save funds for something–I know he is aiming for a Nintendo Switch console so I was taken aback by what he just said.
The Xbox 360 meant a lot to us. We spent countless hours playing games together. We’ve built Minecraft worlds, we’ve slain aliens in Halo, we’ve teamed up as soldiers in Call of Duty, we’ve rocked the house with Guitar Hero and so many more. For Marcus to just let go of it after hearing about kids with cancer struck me and wifey big time.
We tagged the basic Xbox kit at Php6000 ($120) on Carousell or formerly known as OLX. At this price we’d just be saving Php15K more to get the Nintendo gaming console. So I made a compromise with Marcus. When the Xbox gets sold, half goes to him and the other goes to the foundation. He accepted the deal. It’d be win-win.
Facebook post.
On Wednesday I realized I could also sell the item on Facebook. I was right as the result was overwhelming. The post which I made public was shared by a couple of my friends and the comments were encouraging. I felt it became viral even if my past sarcastic posts got more reactions.
Buyer will be busy in the next few days.
The Xbox 360 was sold barely 24 hours after the Facebook posts. The lucky buyer who is an acquaintance at work got our entire 360 stuff–at least most of it as I kept some games as keepsakes. Marcus is now 3,000 pesos richer and I hope the other 3K goes a long way for the kids with cancer. Next on queue, Marcus’ red wheelchair.
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Mood: 3/10 Honks! (Back on minimalism track. Somehow.)
About a month ago I remember Marcus stepping out of his room. It was morning, he just woke up. His smile was all over his face despite still obviously sleepy. He walked right out of his door, hair unruly. He was ready to face the day.
The other day we found the opportunity to grab a bike. Each his own. We had friends though everyone I barely knew. But that didn’t stop us from racing one another. That afternoon was fun even if I almost fell into a muddy patch when I tried to beat Marcus by cutting off the street curb. Boy he pedalled fast, very fast.
Each day I am looking forward to all this. I know these will happen once more, I wish it’d be more often than before. At least in my dreams again.
These scenes have been very vivid lately. Everything was life-like, so real I can feel Marcus’ energy. It was the closest I can get to see Marcus without his Xbox controller, away from his spot in our old sofa. Away from his crippling DMD.
With his twist car and Duplo gun.
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Mood: 5/10 Honks! (Been spending more time with him playing Call of Duty.)
Marcus once again had the opportunity to see the world outside our house, outside the country. Last weekend, with his now blue wheelchair, Marcus went to Hong Kong for his first Disneyland adventure.
The blue wheelchair gets its first airport sticker.
As expected Hong Kong was gloomy.
Our first taste of lost in translation.
Reached Disneyland Hollywood Resort Hotel to drop off our bags and go directly to the park.
First glimpse of Disneyland’s gate.
Weather was hot and humid, stress on humid. Later learned that HK being close to the sea has a lot to do with it.
Marcus watching the Toy Story parade away from the splashes.
Parade that afternoon featured Toy Story. The floats and characters sprayed water so we had to get Marcus out of range to avoid him and his wheelchair from getting soaked.
Our first Disneyland ride.
Waiting to enter the Iron Man Experience virtual ride.
Still reeling from the heart pounding virtual 3D experience.
Our check-in time at the hotel was 3 PM so we had to get out of Disneyland theme park coming from the Iron Man Experience with the plan to return right after we’ve settled.
Clockwise from top left: souvenir shop inside the hotel somehow made up for our lost opportunity to see the other Disney characters; Marcus got a discounted Simba plush toy; Food was pricey so we settled for something less expensive and doesn’t require reservation; Meal was heavy and Marcus was bored so we checked the pool out.
Hotel check-in was a breeze. We got room 6716 which has twin beds. It was comfy, so comfy that I woke up close to 8 PM. Nobody woke me up so I guess everyone wasn’t just vocal about it but the humid park wasn’t worth the return. I concur but it was a pity we didn’t see Mickey up close and personal.
The Garmin came handy in tracking places we visited. It recorded that we walked a total of 4 km just in this portion of the park.
To be continued…
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Mood: 8/10 Honks! (Been a while since my last post. Was busy and this HK trip was a blessing. Thanks wifey.)
Marcus eventually outgrows his red wheelchair after three years. Last year he started complaining that his knees are already rubbing against the frame especially whenever I take him running with me.
My wife had this ingenious idea to cover the wheelchair’s area with bike frame foam padding. Of course, thanks to Lazada online shopping we acquired it with less effort. But it was only temporary. Marcus is growing fast, not fatter but just taller and heavier. He’s lean. He’d be about 5 feet tall if only he could stand.
He was all blue the day we got the wheelchair.
So last week, after weeks of waiting for the stock to be available, we met up with someone at the Festival Mall to purchase Marcus’ wheelchair. This time it’s blue, lighter than the old red wheelchair. And it is cheaper as well at P6000 only. Not bad except that the front wheels rub the foot rest when pulled backwards. We can deal with it.
Still using the trusty red wheelchair. Taken recently at a nearby carnival.
The new wheelchair comes with a lap belt which could come handy if ever we take it out for running. I also realize it will help when Marcus’ core muscles weaken further. Like last week he fell face first after slipping while seated. He got his lips cut but never cried–brave boy. It was scary for us though, signs of things to come. I can only pray the progression slows down.
This week is Marcus’ birthday. He’d be eleven. One day my wife asked, “What’s your wish?” “Last year I wished that I can walk, it didn’t happen,” Marcus simply replied. I looked at my wife faking a smile. His statement stings, we just don’t have an answer.
For now the wheelchair is what we have to make him mobile. We have the same wish for him, maybe dream is the appropriate word. I’m not pessimistic but I have to accept that him being able to walk will not happen in our lifetime. I just hope this new blue wheelchair brings us adventures and better memories.
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Mood: 5/10 Honks! (Monday. Marcus’ new therapy schedule.)
I must admit that I haven’t given my hands the care that it needs. Almost seven days a week I would have a workout that involves putting pressure on my palms and fingers. One day I’d be doing pull ups, next day push ups, and other days I’d do hand stands. Running days are only when the hands get its rest.
Then the bug finally hits me. Despite extra measures to avoid catching the dreaded cold virus that seem to have been all over since the start of this year, an unplanned trip to our clinic to visit a sick direct report caught me unguarded. The clinic was small and enclosed, I was in close proximity as we talked, I got nowhere to hide, and I forgot to wear mask like I would whenever I take public transport. Boom, sick me.
A week since then I had to take the needed break from intense physical activities. I was able to report to work but like the warning on my son’s newly downloaded F1 2018 game whenever he drives the cars too hard, I was forced to continue on low fuel mode. Slow pace in short, functioning in bare minimum just to survive the day.
But sometimes something good comes out of bad things. Sans workout sessions I noticed that my hands have become better. No more splits, no more cracks. Even the calluses are almost gone. “Looks like I have to change my workout routine, I’d do more running, ” I told my wife. “So?” she asked, question prolonged. “I need new running shoes, ” I joked, half meant.
Frankly, with or without new running shoes, I am excited to start fresh. I plan to workout again soon but I will pay more attention to hand care. I am currently using either O’Keeffe’s Working Hands cream (I keep this at work as it doesn’t have any scent that could annoy anyone nearby whenever I apply it) or Bag Balm which I should remember to use every after my exercise sessions. I also need to wear gloves consistently to prevent my hands from direct contact and pressure especially during heavy workouts.
Trust me, this is an improved state.
Now that I mentioned heavy, I may have to change my routines soon. Stuck on our refrigerator is a printout of my exercises when I still have my strap for suspension training. Last February, however, I responded to Decathlon’s Domyos strap recall and was surprised to learn that the only option I have is to refund the item instead of exchanging it. Now my suspension routines are permanently suspended (pun intended).
Looks like pomade but it’s for the hands.
Then there’s also Marcus growing up and heavier. He is starting to fall off the small foldable stool we bought at S&R back in 2018 when taking a bath so this week I modified his Medline Bath Safety Chair that he only uses to reach the bathroom sink so that this time it fits our narrow bath tub. Some elbow grease did the trick to bend the aluminum legs within 14″ width. Bathroom scale also shows he is now 60 lbs (27 kgs) which is why carrying him is becoming a pain in the back.
All these factors considered, I need to align my workout to the demand. Heavy lifting requires strength which means, obviously, more strength training than running sessions. For a while there, I thought I could engage my hands lesser but it wasn’t realistic expectation. So at least until I have recovered fully, the hands take a rest.
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Mood: 2/10 Honks! (Tonight’ the night we make waves.)
Any day out of the ordinary is always welcome. Yesterday was one of those that break routine and I would say it was about breathing fresh air…or hoping to get one.
All schedules aligned, Marcus finally had his chance to undergo the tests that’s been suggested by his doctors years ago. The first one was easy peasy although relatively expensive. The 2D Echo test at the heart station of St. Frances Cabrini Hospital was a breeze. As expected, Marcus finds the procedure ticklish and at the same time interesting. He smiled when the doctor made him listen to his own heartbeat. I smiled when she said Marcus’ heart is normal for now.
Happy heart.
However, it was a different story at the pulmonary function test. Marcus had difficulty sustaining at least three seconds of the required prolonged breathing. Perhaps it was stressful for him to have his nose clipped and be asked to breathe normally, then suck air on cue, and then exhale continuously until the technician says stop which by the way is just half of the process. It took almost an hour to prep Marcus and I was eventually advised that we could come another day when he is ready for the test.
Then there’s me at work. Incidentally, I went to the office wearing a shirt with a print that says “Inhale…Excel.” It was a gift from my current boss that I like–vague subject-verb arrangement intended. But the interesting part doesn’t end there. It was also on this same day I went for an interview for another job position. My first this year. Sigh, inhale, exhale.
***
While Marcus no longer walks and haven’t engaged in something athletic ever since, it doesn’t stop him from understanding sports. For one, I find it amusing that he knows skateboard moves despite lack of experience or even exposure to extreme sports shows on TV. And recently he discovered more on game pass. This past days we’ve been on fairways and football fields. We can now score some pars and have had our winning moments with the Chelsea team. Thanks to Xbox, Marcus can run around sans the need of real life stamina.
***
Mood: 2/10 Honks! (Fingers and toes and heart crossed.)
Run with music? It took me only a couple of days to decide that this is the second official running event I’d do this year the first time The Music Run PH appeared on my Facebook timeline. The words discounted registration rate for early birds was also a come-on. It was only July then but I could already smell November immediately after I filled in my personal details and clicked submit.
The next runs were soon more purposeful. My plan was to beat the 10K PR I did in February when I joined 7-11’s running event. I finished it after an hour and 6 minutes but I knew I can do better.
The twist came though when Marcus got the hang of running with me few months later. He must have loved the feel of his wheelchair moving faster that it would at home or in the malls and so he’d say yes whenever I ask if he’d like to go out and run with me. He got hooked so the training strategy changed.
I got this.
I wasn’t really sure then if organizers of The Music Run PH would grant my request but I sent a message anyway. Their response was quick, they said yes I could bring Marcus with one simple rule–stay on the left lane. The update got me very excited. The weekends that followed we logged runs farther than 5K, progressing each time.
This Saturday the months of anticipation and training was tested. Wifey supported our adventure so we all checked in at one of Marcus’ favorite place–the Acacia Hotel in Alabang–which was perfect due to its proximity to The Music Run PH’s venue.
Loading up on McDonald’s carbs.
Powered by McDonald’s spaghetti happy meal for lunch, I finished all the French fries even, we set off. The venue was five minutes away from the hotel and the quick trip on foot also served as my warm up run. There was no gun start so we joined the other runners as soon as we reached the start gate at about 4:30 PM. Weather was nice and warm.
Several people, participants and marshals included, cheered for Marcus. The energy was contagious and it motivated me more. The road was almost packed so I tried to steer clear of other runners and stuck to the left lane as agreed but every now and then I’d overtake those who paused and walked. Loudspeakers playing upbeat music were set up along the route so I was tempted to do the floss at some point but decency kept me from doing it–old guy doing a Fortnite emote doesn’t look good around sweaty millennials. So I pushed forward instead. Marcus shared his Skittles whenever I stop for my Gatorade.
Two loops later, we reached the finish line. It was already dark, though night was young. We clocked 10 minutes more of PR but that’s good enough considering the wheelchair. A quick random interview and we’re soon out of the event’s ground, happily on our way back to the hotel with our first ever 10K finisher medal. The race was tough as I have imagined but I think we’ll do this again.
Two loops of this. We were hamsters in a music trail.
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Mood: 3/10 Honks! (Early morning bit looking forward to buffet lunch.)
Three years ago we celebrated our first Duchenne Awareness Day. Marcus was with his 1st grader classmates when they let go of the symbolic red balloons in unity with the rest of the world who continue to raise awareness that such type of muscular dystrophy exists. He can still walk back then.
He demands pizza for Duchenne Awareness Day.
Duchenne Muscular Dystrophy is a condition that affects mostly young boys. Also known as just Duchenne or DMD, this condition is progressive with symptoms that may manifest during the early stages of childhood with some kids starting to feel the signs earlier than the others. In Marcus’ case, his condition started to become obvious about a year since he started to stand up. He walks weird, can’t run like other kids, and had difficulty holding himself up on the monkey bars just to name a few. Eventually we discovered he has DMD after we had him checked at the age of seven. At eight he started using his red wheelchair.
DMD poses a whole lot of challenges on parents. The need for commitment, love, compassion, and patience cannot be stressed more than enough. To be honest, it is physically and mentally straining but once you put yourself in the shoes of the child who has it, then everything else that you secretly complain about becomes petty or trivial. As I always remind myself, if I’m frustrated and tired, more so Marcus. This short thought keeps me back up on track.
Today, September 7, we once again join all the families and the other Marcuses around the globe who continue to deal with Duchenne Muscular Dystrophy. We also wish good luck and more power to the people whose aim is to find a cure that could be available soon to everyone who has DMD. It may not happen in our lifetime but as long as the awareness is alive there is always hope. We also recognize the physical therapists (FYI, tomorrow is World Physical Therapy Day) who work hard so that our young boys’ lives are a little bit better each day.
Today’s PT session.
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This week wifey had me watch Fundamentals of Caring on Netflix but we barely made it halfway as I got so sleepy after coming out of night shift. Despite the short clip I could already feel that this film’s depiction is accurate. Hope that we finish it this weekend and I hope I don’t shed a tear. Shhh.
Marcus Can Blog 