DMD and COVID-19

2020 so far is the toughest time to deal with as this year has not been favorable for children with Duchenne Muscular Dystrophy (DMD) like Marcus. On top of his existing mobility challenges, events this year worsened the health risks and restrictions on where he can go.

Marcus has DMD which is a progressive condition common to young boys his age. This genetic condition impacts their muscles thus affecting movement.  To make matters worse, internal organs too decline in functions over time. In Marcus’ case, besides being unable to walk and limited hands mobility, symptoms we have observed are stuttering and abnormal bowel movement. Breathing and heart functions could degenerate sooner or later.

Our first scare this year was the Taal volcano eruption. Living just past the 15-kilometer danger zone, our fear back then was what if the ashfall linger for a longer time and consequently affecting air quality. Thank God, we survived that, Marcus got to see the world outside our home after few weeks of waiting for the thick ashes to get washed away. We had trips to the malls a couple of times after the roads were cleared of volcanic dusts.

But just when we thought life is starting to go back to normal, we soon realized in March the mask is here to stay. This time indefinitely and more worrisome. No thanks to COVID-19.

This time the pandemic locked Marcus in at home. Since the quarantine period started, he has not been wheeled out of the house and the windows have been his only view of what’s happening outside. He has missed his therapy sessions at the hospital and he has never returned to the malls again. I went to a Toys ‘R Us to buy an XBox controller without him.

Amidst all this, the transfers from his room to the living room and back, we are grateful that Marcus remains healthy. Knock on wood, he was never sick. He’s relatively active, still sharp in what he does best–video games. His weekends at the malls have also been replaced by karaoke nights in his room. He likes Taylor Swift’s songs, Twenty One Pilots, and lately, BTS. I’m not complaining. I always look forward to dancing while he sings. Good cardio in the middle of the night, in my dreams…Oopps.

Today, September 7, we celebrate another Duchenne Muscular Dystrophy Awareness Day with the hope science will find a cure to this condition soon. Wishful thinking, sooner than COVID-19.

Marcus testing the reclining chair.

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Mood: 2/10 Honks! (Big Bang Theory on Netflix.(

Raising Awareness that DMD exists

Image grabbed from Muscle Dystrophy Australia

Last night one of things I made sure I discuss during our meeting was to set expectations why I would wear masks whenever I sense someone is sick in the room. It seems like a trivial concern to most but not for families with kids who could easily start to get sick, or even worse (God forbid), just because of a mere common cold.

Our son Marcus is among these kids. Since we learned he has Duchenne Muscular Dystrophy (DMD) we have been more careful. I myself turned germophobic (I can see my sister clapping, proud) just for this reason. Our house is never without alcohol, disinfectant spray, wet wipes, and surgical masks–there was sort of panic when Taal erupted and the supplies of masks ran out for days.

People see me and my wife strong but every now and then we would talk silently, not wanting Marcus to hear, about our fears sentiments, and frustrations. Having someone with a rare and progressive disease is a challenge physically and mentally but it is a good thing to see that the awareness is spreading–thanks to support groups and social media.

While we wish the cure for DMD becomes available soon, the reality is it won’t happen in our lifetime. Right now we just have to face this head on and pray that as the condition worsens we get stronger and more prepared. Keep us families with members who have rare diseases in your prayers and we’d be better.

Okay, enough of the drama, Marcus wants to play Call of Duty.

Marcus caught cold this week and still recovering. Here we are inside his room pausing from our Netflix’s Formula 1 viewing

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Mood: 4/10 Honks! (Hope Marcus gets well soon.)

Dancing To 2020

Last year was crazy so there’s no way to end it but in an equally crazy fashion. Blame it on wifey’s top secret, not to mention pricey, gift to Marcus in the form of a Nintendo switch. His first game was Pokemon but his next choice was surprising. A dancing game.

Another Santa, another baldy guy, made this request happen. Before we know it, Marcus now has in his possession a complete Just Dance 2020 game. And he has evil plans–me dancing with the game.

So hours before New Year struck we got sweaty at home. Sans alcohol, I was dancing to Marcus’ music choices. Been dancing to this game days prior so I felt I was getting the groove, captured one on video, and dared to post it on Facebook. It was ugly but so far it got hits and comments I didn’t expect. Maybe I will try singing next time.

My dance getting unexpected reactions.

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Well I’m also a recipient of wifey’s good year. Composed this post using a nice Redmi 8 Pro. Yup, 2019 was indeed crazy.

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Mood: 2/10 Honks! (Will be boarding for my trip to Kansas in few minutes. Will miss home.)

My 47th Christmas

Is there a way to push Christmas back? This has been a question most, if not all, wish would have an affirmative reply. It’s a repetitive thought that even the modern day science still doesn’t have any answer until now. Boo Back To The Future fantasies.

Is it Christmas already?

Eleven months ago we all wished it would be December again but here we are all of a sudden almost caught off guard. It the midst of our hectic schedules Christmas was creeping in. Kids like it, we adults not so much.

Personally, this year was busiest I’ve ever had. It was as if everything was overwhelming. This year was the complete opposite of last year. For several months of the first half of the year I stayed longer hours at work. I was in and out of the house like a sleepy cuckoo clock. Thankfully, this last quarters I somehow picked up the rhythm. Then the unexpected changes our client made at work plus the new schedule were blessings in disguise. My team and I are no longer night owls.

In perspective, this is my 47th Christmas and it seems I still don’t know how to handle it as an adult, as a parent. I wish I’m back to being a young kid clueless who really Santa is. Well who doesn’t? I don’t know if I’m doing Christmas right, if I’m playing Santa well. My wife has her answer to that I’m sure.

I don’t want to sound cliche but I just wish that this Christmas will be more meaningful. That behind all the Lazada and balikbayan boxes would be the real spirit of giving and sharing. I still have several days to discover if I’m capable of pure yuletide spirit.

Merry Christmas everyone. Just me stopping by to catch up on my blogging duty.

***

Grinch grins. I got a Dremel from wifey and Marcus.

The Lazada delivery has been more frequent lately and I feel like our house is now its warehouse.

In an effort to save on Christmas packaging, wifey asked me to keep the Lazada boxes so she can use it to repack her gifts.

“If I don’t get any hint that none of those boxes are for me then these empty boxes go to the trash tomorrow,” I said in a jest. She took it seriously though and true enough, few minutes later I received a gift wrapped hurriedly in plain white paper. Thus the Dremel. Thank you female Santa.

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Mood: 2/10 Honks! (Hard to be minimalist this Christmas.)

Never Meant to Be

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.

With his twist car and Duplo gun.

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Mood: 5/10 Honks! (Been spending more time with him playing Call of Duty.)

Marcus Got New Wheels

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.

He was all blue the day we got the wheelchair.

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.

Still using the trusty red wheelchair. Taken recently at a nearby carnival.

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.

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Mood: 5/10 Honks! (Monday. Marcus’ new therapy schedule.)

So We Have A Dog

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.

Being cozy with Marcus.

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.

First day Shadow went farther from home.

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.

Shadow loves the yoga matt and is always around when I stretch after running.

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Mood: 2/10 Honks! (Second week to see the team.)

Inhale, Excel

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.

Happy heart.

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.

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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.

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Mood: 2/10 Honks! (Fingers and toes and heart crossed.)

I Survived Buy-One-Take-One Day

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.

Me trying to summon inner peace on our way to the cashier.

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.

A giant Starbucks coffee pack made my day.

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Mood: 3/10 Honks! (Can’t wait for this sleepy week at work to end.)

I Think I Can Dance

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.

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Mood: 3/10 Honks! (Wifey said we have a Xbox 360 Zumba game.)