Over time I discovered I could dance or at least have the guts to embarrass myself all in the name of fulfilling what my son can’t do.
But tonight The Floss or Orange Jam from Fornite isn’t part of his requested moves. Marcus shifted his attention to his almost forgotten Xbox 360 console and found a demo of a Sesame Street game. The game requires Kinect and wifey did the story part while I was left to do the dance segment. Then Marcus got hold of the phone and had my moves recorded. This is my first ever Kinect dance game and I’m starting to think that I can dance indeed. Will have to put some shirt on next time though.
Mood: 3/10 Honks! (Wifey said we have a Xbox 360 Zumba game.)
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.
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.
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.
Last weekend must have been the toughest parenting week for us. Details I choose to withhold for now but as the cliche goes, all’s well that ends well. To cut the story short some small kid is grounded and so we’re all back to basics at home. Checkers, dominoes, and Jenga are ongoing favorites.
This afternoon Marcus asked again if the Jenga blocks could be eaten, and out of boredom I complied and searched for it on MyFitnessPal. Guess what, the app has an entry. A Jenga block is one calorie. No kidding. I don’t know now if which one is weird, me thinking of trying a Jenga block or me surviving another Sharknado movie on Netflix.
Mood: 3/10 Honks! (I can’t wait myself for this video games ban to end.)
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.
Mood: 2/10 Honks! (My pull-up hands need to rest. It’s all cracked up.)
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.
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
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.
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.
For something to be resolved, the root cause must be recognized, and it has to be either fixed permanently, if not controlled. This must be my week’s theme. A year ago, thanks once more to Timehop, I realized all my efforts to lose weight were going nowhere. I ate less, I worked out, I ran but all were in vain. Something was stopping my desired progress.
A picture of my mobile personal drawer reveals I packed to work bread loaves, bananas, crackers, protein powder, and eggs (in small blue container). All seem the ideal weight loss food, or so I thought. Few more days later I’d discover some of these contribute to my weight loss plateau. Do you recognize the errant food? I’ll reveal it when I reach my first year of using MyFitnessPal.
Saw this Tweet on Facebook (?) and I couldn’t agree more with the message. We recently had a long talk, over my sleepy state coming straight from work, with our son to remind him that there would days when we stop being friends with him. It is when we wear our parent’s hat and call him out when we need to so he grows up as a good person instead of a brat who knows no direction, observes no manners, and respects no rules. Frankly speaking, I hate such parenting talks but it has to be done. Sometimes we just have to dare be hated if it’s what it takes to remain in control. If only some leaders realize this too.
Mood: 2/10 Honks! (Wifey stopped looking like Shrek. I can work again.)
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.
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.
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.
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.