Live The Beat

Marcus collected our Fitbars and finisher medal.

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.

***

Mood: 3/10 Honks! (Early morning bit looking forward to buffet lunch.)

Advertisements

To the Marcuses Around the Globe

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.

***

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.

***

Most Valuable Fortnite Find

Wifey, me, and Marcus.

Step in their shoes. Immerse. That’s what I did in the recent weeks to learn more about this game our son loves to play. One day, finding nothing to do before I hit the bed coming from night shift, I logged in on Xbox live while our son was still in dreamland. I played Fornite Battle Royale, solo mode.

The first time was awkward. I was playing against 100 other players somewhere around the globe and I felt like I was the oldest noob. But I had my beginner’s luck. There was a do or die moment when I met a player eye to eye while he was hunkered down a staircase. He appeared as scared as I was only that he was weaponless. I eliminated him and it made me happy but guilty. I can’t be a real soldier I guess.

Then there was another day I saw my son’s frequent playmate online and he invited “him” to join their party. Their voices reveal they’re kids. Again, I was in the midst of young but better players. It was a good thing our Xbox doesn’t have mic so they mustn’t have known my identity. My moves likely made them smell something’s fishy though. “Is that Marcus?” a voice asked. I was slow and clumsy with the stairs build and that almost blew my cover. Embarrassing.

That’s what makes going online scary. There’s that risk of interacting with the wrong people and finding something that could be offending especially for the young kids. Latest case in point is the Roblox mess. The challenge to monitor online activities of our kids nowadays is getting tougher.

But there are fascinating stories and coincidences too. Like today, curious who our son is playing with, my wife researched and, by the power of the internet, found them.

What’s more interesting is that she was not only able to see the faces behind the names but she also discovered something more. The kid who became our son’s first online friend also has the same condition. Both of them has muscular dystrophy. Wifey and the kid’s mother are also part of an online support group for parents with children who has DMD. Who knew there’s more to finding golden chests and llamas on Fortnite?

Marcus is still asleep and we can’t wait to tell him the news.

Found a stray shopping cart at work and it got me excited. Blame Fortnite.

***

Mood: 2/10 Honks! (My pull-up hands need to rest. It’s all cracked up.)

Our first visit to a store that doesn’t exist

It’s been weeks since the monsoon rains have stopped Marcus from getting his regular Friday physical therapy. Opportunities to get him out of the house and away from his video games every weekend have been much harder. Yesterday weather permits but instead of going to the malls we frequent, we decided to go to SM Mall of Asia (MOA) instead with Marcus and I having our own secret goal: visit Ikea.

It was a two-hour drive slowed further by weekend traffic at the SLEX and Skyway expressways plus intermittent heavy rains. The sky cleared when we reached MOA via Entertainment City exit and it appeared then we could move around SM by the bay when the mall gets stuffy for Marcus.

Still clueless of what we’re about to discover, we pushed through finding Ikea. While having dinner at Pound by Todd English I checked online and read that Ikea is between MOA Arena and SMX. Next plan was getting there as soon as we have our tickets for Mission Impossible: Fallout and when drizzling has stopped.

I began to feel suspicious and stupid when I realized I must have skipped some details on the news about Ikea opening in the Philippines. Three security guards later, the last we asked said, “Yan malamang sir (That must be it.)” He was pointing to a still empty fenced block right outside of the mall. Sucks. It was a matter of will open versus is open. With only one short crane sticking out of that place, I don’t believe we’ll see an Ikea store this year.

Mainly to take note where we parked.

***

The latest Mission Impossible sequel was a disappointment. It’s overrated and hyped. It’s like one of those films with trailers that are a whole lot better than the movies. My wife and I were dozing on and off but Marcus said he enjoyed it although I know it would’ve been a better experience for him if we watched it in a cinema with stable reclining seats.

We should have just watched the free Okada fountain show.

***

Wheelchair access Bows and Boos

Bows:

Elmo at Pound by Todd English’s bar area.
  • Jollibee staffs at MOA Entertainment Hall who made sure Marcus and his wheelchair get a space.
  • Pound by Todd English staffs who accommodated us despite the tight setup of their restaurant. Burgers were surprisingly affordable and great too.
  • Restroom staffs who kept the PWD area clean.
  • Okada tour bus attendant who entertained our questions and promised to get Marcus prioritized.
Recreating how he looked like 10 years ago the first time he was in this mall.

Boo:

  • SM Mall of Asia south parking building elevators were already unavailable when we got out of the cinema past 12 midnight. Someone parked in the same area had to find security guards to get it back running. Not cool.

***

Mood: 3/10 Honks! (Weekend weight.)

Avengers: Infinity War 2X

Skip the Avengers: Infinity movie and save money. Besides that the sentence rhymes, it was my plan this weekend after our company treated us employees to a blocked screening at the nearby Vista Mall coming from a Friday night shift.

Other than having a bag of bland popcorn–I passed on the salt and flavoring–and a warm bottle of orange soda for breakfast, the movie treat was a deviation to my normal weekend diet, it also wasn’t Marcus’ idea of how his Sunday would be like.

I thought he and his mom already worked out an alternative when he said before going to bed Saturday night that he discovered he could pre-order Avengers: Infinity War on Xbox Live. Sounds like a plan, a cheaper plan of just $15. All he needs to do was wait until the movie becomes available online.

But I should’ve have known better that waiting doesn’t work for him. I learned sooner that Marcus is still looking forward to watching it in the cinema. Wifey relayed the message minutes before I hit the sack that night. “Your son asked if I could carry him to the seats if it’s just the two of us and I answered yes, of course. That’s his concern,” she said but left her statement hanging.

“So what’s your concern?” I asked, fishing for unstated needs–force work of habit kicking in. “That if I could actually carry him,” she replied half firm, half joking. We had a good laugh out of it. I know my wife’s humor as much as I know her hidden strength. I know she can carry Marcus no doubt.

So I went to bed that night still with the same initial plan–drive them to the mall, wait for them outside until the movie ends. I was ready to kill time with my Netflix downloads and spare purchasing another Avengers: Infinity War movie ticket in the process.

That last conversation stuck though. Our routine in the cinemas we’ve been following for the past years since the wheelchair kept playing inside my head until the next morning while I eat my oatmeal-raisin-peanut butter-banana combo to compensate for the other day’s toxic choice.

He came prepared for the cold.

Buy popcorn for Marcus, get snacks for us, transfer him to his movie theater seat, carry him to his wheelchair if he asked to go the toilet, then settle back again to enjoy the film. It’s been like that most times. And lately he’s gained more weight.

I need to be in the cinema. Period.

So that’s how I ended up watching the same movie twice in a row. Good thing the comfy Solenad Cinema 3 allowed me to snooze every now and then and to see Marcus enjoying everything–the Avengers and Guardians characters, Stan Lee’s cameo, Blazing Cheddar popcorn, and his favorite reclining seat–was worth spending an extra 400 pesos.

Weekend mission accomplished.

***

The Avengers: Infinity War is a dark movie and it could disappointment people especially those who expect a triumphant hero at the end. This movie is a game changer. Thanos has to die.

***

Mood: 1/10 Honks! (Busy week ahead.)

Ten and Counting

There’s no stopping time as Marcus turns ten. He’s become smarter and continue to be more expressive. He now knows what he wants and if he had his way, he wants things to happen.

Color of the day.

Even before 2018 started he was already specific with his plans for his birthday this year. He asked if he could celebrate it in Acacia Hotel Manila with just the three of us–introvert parents breed introvert kids, don’t we? Wifey tried to offer other choices but Marcus has made up his mind. Must be the pool or the rooms or maybe it’s the hotel’s proximity to Festival Mall or ATC, his comfort zones since then. Or maybe it made a mark on him when we almost lost his favorite plush Frankenbob toy the last time we were here but staff found and returned it. Whatever, he just loves the place no doubt.

Acacia pool, Frankenbob, Elmo

His affinity for this place in Filinvest Alabang over the others seemed to prove worthy once again. A grand welcome greeted him when we stepped in our room which would be our home in the next three days and two nights. Staff prepared the room for Marcus with balloons and a whole chocolate birthday cake. It was the most number of balloons he ever had. Staff spoiled him more with complimentary desserts they delivered to our room in the evening.

This birthday would have been a whole lot better if only we could promise to give him his special wish he made the morning before we set off on our staycation.

“What’s your wish?” we asked him before blowing his Homer cake–a pink sprinkled Krispy Kreme donut wifey designed as a cake with one birthday candle in the middle. Still in his pajamas with his ruffled newly dyed golden hair, he said, “That I could walk and a PS4.” I smiled and cheered but I know that wifey too silently wished and felt the same thing I did as I finish the video recording. It was something we both expected our son would say but one of it just won’t happen in this lifetime however hard we’d want to. A miracle is all we could wish for.

Happy birthday son, we still love you, we are here for you.

***

Marcus skipped his therapy this week but he left his physical therapists some pizza the other Friday to celebrate this birthday.

Marcus and wifey with staff and interns of St. Frances Cabrini PT center.

***

Mood: 3/10 Honks! (Hope Marcus doesn’t catch the bug. Wifey and I got the sniffles.)