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.
Mood: 5/10 Honks! (Been spending more time with him playing Call of Duty.)
I was expecting to taste authentic Chinese cuisine since we landed in Hong Long but I think we didn’t had any. At the airport we ate curry, the best curry I have tasted so far, and a chicken with mushroom menu which were surprisingly very good although heavy as both were served with rice.
Then last night’s dinner was also rice and pasta that I had so much carbs to burn just on the second day so I was eager to go to the gym.
I racked up 5K on the treadmill, did some weights and returned to Hollywood Hotel. I arrived with Marcus up and awake and everyone else eager to check out for the next phase of our Hong Kong trip.
Today’s main plan was to find stuffs on sale. It would be a long day. We transferred to Stanford Hillview Hotel which we accessed mostly by HK’s train (MTR) all the way from Disneyland station. All of us were spent (and silently grumpy) when we reached Jordan train station so lunch was the immediate agenda.
It was another meal that didn’t come close to what I had in mind for Chinese food. Specifically noodles. Marcus was looking for McDonald’s and found one so we settled for it as well. Nothing special there, FYI, except for the sight of expensive cars like Ferrari, Porsche, and Teslas passing in front of the fast food that kept Marcus entertained.
Our hotel was a short taxi ride away. We could’ve even made it on foot but everyone voted against and it was good decision. We didn’t waste much time upon checking in. We hit the streets with the first challenge of wheeling Marcus on a road with 1.5 slope that extends for several meters.
Initial destination was the museum with some side trips. We passed by Kowloon Park to check out the aviary. There wasn’t much to see there except for groups of familiar Filipino faces huddling together on their day off.
We reached the museum but scrapped the plan to get inside. Firstly, it was packed, then we learned there’s a schedule, and from outside I can see stairs. Not a place for Marcus. It was just about 3 PM so we decided to take the ferry to Central Hong Kong. Learning that it’s where there’s Jollibee for Marcus and cheap chocolates were compelling enough to stay exposed to the weird weather.
Hong Kong Central was more crowded and busier. It was common to see people dragging luggage which I later figured are meant to store stuffs that they bought from the stores. Plastics are charged extra so it pays to bring luggage if you’re in for some shopping spree.
It rained heavily in the afternoon so Marcus and I had to seek shelter while wifey and her sis did the bargain hunting. After what felt like hours we saw their faces emerge from poorly lit and crowded part of Worldwide House and with them was a bag full of chocolates. Never been happier to get out of a mall.
Sun was still up but it was almost 7 PM when we reached the hotel. By then it already felt like I have used up every extra calorie I stored from eating magic cone that Marcus didn’t finish and scoops of White Rabbit and choc mint ice cream back at the ferry station. The last stretch running and pushing Marcus up the steep road had me accept that Jollibee chicken bucket was best recovery food that evening.
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.
Marcus watching the Toy Story parade away from the splashes.
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.
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.
To be continued…
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.
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.
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.
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.
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).
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.
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.
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.)
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.