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.

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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.

***

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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.

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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.

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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.)

Fight For PWD Access

It’s another payday weekend, malls would be packed once more, and when this happens parking becomes more challenging than usual. No big deal if you think about it as sooner or later, a slot frees up and it could be yours. Its proximity to the mall doesn’t matter. We could just walk.

Sadly, not everyone has this luxury to just walk. Not everyone could just park their car somewhere, take a hike to the mall, and on rainy days like today, make a dash to the nearest covered area. Not everyone.

Image by Robert Mark Santos as posted on Facebook.

If you still don’t know it yet guys, people with disabilities (PWDs), specifically those in wheelchairs exist. Young and old alike, whether they can wheel themselves on their own or not, they exist. And if you still aren’t aware of it–by ignorance, poor upbringing, or plain insensitivity–PWD parking slots exist and should be respected.

PWD parking spaces are supposed to be reserved for folks who lack mobility. These slots are specially marked, wider than the regular ones, and are normally located close to PWD access ramps. While not all PWD parking spaces are “intelligently” designed, being aware that these are made to serve a specific purpose–and therefore must be used only by its intended patrons–is already a good start in showing that we are sensitive to others who need the PWD parking spots the most.

Not all PWD access look like easy access but don’t block it anyway. (Credit to owner.)

So if today you plan to enjoy your weekend, be sensitive and kind. At least before you enter the crowded mall. Don’t be that guy who parks in PWD slots just because you find it available when you arrived at the parking area or just because you figured your compact car or motorcycle fits the spot. People in wheelchairs will appreciate it a lot if you make their life less stressful by giving them the access that they deserve.

***

The struggle to get a PWD parking slot is real and to understand why people who seem fit and abled continue to use it.

Whenever I see a party of abled individuals getting out of a car parked in a PWD slot I couldn’t help but wonder if either one of them qualifies as PWD. Someone once disputed that definition of disability is broad which makes it hard to judge if a person who appears fit should be allowed to use the PWD spot.

Pregnant women, elderly, and those who lack mobility are apparently the ones who need to be prioritized in using the PWD slots. But what about those with other conditions that aren’t obvious physical disability?

Then there’s also inconsistency in implementing Republic Act 10070 which protects the welfare of PWDs. There are still establishments that lack PWD access and there are places wherein nobody regularly checks if a person using the PWD parking space is indeed a PWD or with one who needs assistance.

There’s still so much room for improvement in dealing with PWDs. We just can hope and pray the day would come when more, if not all, people recognize and respect the needs of people with disabilities.

***

Mood: 3/10 Honks! (Internet drags.)

Getting Used to Fancy Cinema Seats

When Marcus was smaller he almost got stuck in a cinema seat when the foldable chair tilted back in place. Since then he would hesitate to be seated alone for fear of falling in the gap once more. So it did come as a surprise when he immediately loved the first time he experienced watching a movie in a stable and comfy recliner seat. It was back in 2016 in California. It was a Star Wars film.

With our recent preference to avoid Alabang traffic we discovered that Cinema 3 of Solenad in Nuvali also offers such luxurious seats. For P400+ (approx USD7) per person it’s a win-win regardless if I like the movie or not. The recliners make comfy beds when boredom or effect of graveyard shift takes over.

Uptown Mall’s ultra cinema knows how to spoil a kid.

Two days ago we found a better movie deal. Uptown Mall in BGC has what they call ultra cinema which likewise offers recliner seats except that for almost the same price tickets already include refillable snacks of soda and popcorn. Take note, refillable. Soda. Popcorn. Besides the regular buttons to control the seat’s positions, there’s a summon button for the attendant when snacks run out. Thankfully that didn’t happen and our Incredibles 2 started and ended without interruption. Sort of.

Coming out of a short nap, thanks to the spicy Scott PNC burger and the free cheese popcorn and 500ml Coke, I had to excuse myself for a pee break. But what did I miss? None. Not only that the cinema’s toilet is clean, it also has speakers that play clearly the movie’s audio. I could have stayed longer in there and wouldn’t have missed any except watching Mr. Incredible play regular parent for the most part of the movie. This is how all cinemas should be like.

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New rings after 19 years.

We stayed for three days and two nights in F1 Hotel Manila, BGC to celebrate our 19th wedding anniversary. The hotel was average and our room is similar to what we had in A Venue Hotel wherein there’s a separate room from the suite’s receiving area.

It’s not an issue that the bathroom didn’t have a tub but it took time for housekeeping to provide a chair for Marcus to use while taking a shower. So his first shower was done seated on the floor. Lesson learned for us: bring our own monobloc chair next time.

The hotel has three pools but the lap pool was under maintenance. Two options left weren’t really good and pool area was quite tight considering Marcus has a wheelchair.

A couple of treadmills in the gym were also down. Towels aren’t readily available unlike in Acacia Hotel. I had good sessions though and what kept me going back was what I like the most in this hotel.

What the hotel lacks in its room and service, it makes up for in its breakfast buffet. F1 Hotel Manila serves remarkable food. I liked everything I had on my plate–veggie curry, Frankfurter, omelette, tortang giniling, Danish, pancakes, etc. My MyFitnessPal app recorded about 1000 calories alone for each free breakfast which was more than enough to fuel my treadmill runs and weight training. FYI, I returned home with just three pounds more.

***

It rained hard so we sought shelter and learned we can afford Denny’s.

The hotel didn’t stop us from enjoying wedding anniversary though. We tried new things like our first Grab car ride and we discovered that we can afford Denny’s. It was also nice to set aside my phone for most of the day while I give more attention to Marcus, watched cable TV movies with him and listen to his perfect impression of his mommy sleeping. Trust me, he nailed it. Good times.

Glad we grabbed a Grab.

***

Mood: 3/10 Honks! (Uneventful return to reality.)

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.

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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.

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