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.)
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.)
Six months later I noticed I haven’t had an entry about our dog. Once referred to as a small rat for being so tiny the first time wifey got it out of a box that was less than half of a regular shoe box into our house is now a grown up dog and we think it is still growing bigger and/or fatter.
Named after Marcus’ pricey smart toy dog he got as a gift while in the US, Shadow soon became house-trained. I’d wish it’s toilet-trained but the fact that it whines whenever it needs to “go” and do it outside, wherever it pleases, is good enough.
It wasn’t all good and easy though having him around. With me especially. I had less tolerance to pet peeves so I didn’t deal with most of it too well unlike wifey. I was strict. However, what I didn’t learn from reading about dealing with pets, I learned from Marcus. Some the hard way.
An animal lover since he was younger, it was his wish to have another live pet at home after we lost our cat, Mittens, in 2016. We tried a turtle and we still have a dwarf hamster. It took a couple more years for us to test if we can have something furry and bigger. Hypoallergenic dogs are out of the question due to costs. Thankfully, Marcus never had asthma attack with the mongrel shedding all over. So far.
Disciplining the dog was always the issue. Marcus is so particular with how his pets are handled. He reminds me when to clean the hamster. He would protest whenever he sees the dog hurt. It was a challenge explaining to him why I need to keep the dog from doing stuffs. Why there should be rules on what the dog can do and can’t do. At least he now knows to keep Shadow at bay whenever necessary. I taught him that a slight tap to the nose works.
Pet peeves aside, Shadow as it turned out is an active mutt. It has short bursts of energy. It is playful at the same time annoying–I was drafting this post with Shadow licking my head, biting my elbows. It plays fetch inside the house, it runs and jumps around which is the very reason I decided to install an anti-tip strap to our flat TV. Marcus loves all these antics.
This is why I now appreciate Shadow more being with us. To see Marcus enjoy the dog’s company makes me think we made the right decision to get a dog and deal with pet peeves in the process. I think I have learned my lessons–continue to learn may be more appropriate. I’d like to believe I’m a better pet owner and father, while I’m at it. We’re now like an ideal family out of Marcus’ Sims game. If only this dog could get a job or at least run along.
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.)
Remember that lemon fan? Our weeks of being under the mercy of rechargeable handheld Iwata fans have ended. Yesterday, we went to our first ever S&R buy-one-take-one sale day with the main purpose of getting a replacement for our now useless electric stand fan. Well, one of the main purposes, at least that’s how wifey justified it.
The experience was crazy. I’ve heard of long queues during sale events but I never realized how long is long until I saw the queue of restless shoppers twisting back and forth outside S&R’s Nuvali store like an oversized hungry Slither.io snake. To be honest, I always appreciate Marcus’ wheelchair on days like this. We soon bypassed the regular line and was ushered to the priority lane where there are few patrons waiting to be accommodated, though including some grumpy senior citizens. A compromise I was glad to take.
Entering the store wasn’t the end, however. This time we had to weave in and out and dodge over eager shoppers as they push their trolleys around like zombies out for blood. The line outside the store seemed more civil and subtle. To discover that not every item is buy one take one made me feel more impatient and secretly regret driving despite lack of sleep just to be there.
But wifey was a fighter. All women are, I guess. To them the word sale is caffeine. She was like on zen despite minimal lunch. What was once an empty large pushcart was soon filled. To her wallet’s credit, I noticed that the pack of toilet paper that Marcus and I were kidding her as the second on her list wasn’t the reason her cart was overflowing. Two boxes of stand fans shared space with other stuffs. Minimalism died that day.
Four hours later, we exited the store triumphant. Or more aptly, relieved. The buy-one-take-one smoothies capped our sale day. So are we going to do it again next time? Our answers are opposing. Mine and Marcus obviously on the negative side. But barely 24 hours after, I heard wifey saying she wants a second shot. Fingers crossed, I hope S&R drops prices by half in the hardware and car isles. I’ll be ready by then, hope my wallet is.
Mood: 3/10 Honks! (Can’t wait for this sleepy week at work to end.)
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.