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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Balloons

One that got away.

Timehop continues to amaze me with what it can pull up from my past posts years ago today. Some cringeworthy, some funny, some sad, and some funny kind of sad like this one from eight years ago. This was the last balloon I’ve ever bought for Marcus which got away from his grip just before we left MOA. Few years later though we’d buy balloons again for him, this time only red balloons–the symbolic red ballooons we released on our first celebration of Duchenne Awareness Day.

Duchenne awareness day symbol.

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We don’t have balloons today but the significance of this day remains in our hearts as we remember everyone with DMD. God bless all these children and anyone–especially their parents–who commit in making sure this progressive condition doesn’t stop them from enjoying life.

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Mood: 2/10 Honks! (That ribs for lunch…)

Genetic Testing At Last

What started as a table discussion in the US has finally materialized. Yesterday, Marcus’ genetic testing was done at UP-NIH. It took us several  exchange of emails with support groups (thanks to you guys!) and hospitals  and leg work that require trips to Metro Manila to exhaust our options in finding an alternative to this expensive procress. Now Marcus blood has been extracted and would soon be tested to determine if his strain is the one that the new DMD drug in the market can cure.

But testing is one thing, the medication is another. We keep our hopes high yet our expectations realistic. It’s waiting game for now until 3-4 weeks after. Que sera sera. We’ll make our next steps whatever the outcome is.

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Mood: 3/10 Honks! (Survived Tuesday.)

Watch “Canadian Tire “Wheels” :60” on YouTube

Just saw this one on Facebook and it made me sad yet at the same time happy that such campaign to let everyone know how a simple gesture could go a long way. This is something any parent with a kid in a wheelchair would appreciate big time.
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Image from Lad Bible

Also on Facebook, Lad Bible posted a video of a guy in a wheelchair doing dips in a gym. Looking at the weight he has to deal with is like me and Marcus combined. Dips has been one of my favorite routines since I started working out. I still do a variation of it at home and Marcus’ therapy session also includes same exercise though assisted by physical therapists. He just finished his second day today.

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Mood: 2/10 Honks! (Crazy schedule this week.)

Marcus Works Out

I can see weights. I can see treadmill. All familiar equipment so it must be a gym yet not. And as much as I’d like to I’m not returning to working out in the gym either. We are in the place that is going to be Marcus’ regular hang out for a month at the very least. It’s St. Cabrini’s rehab center. Our first time here, our first time to have him undergo physical therapy.

Our expectations are high but realistic. We hope the next sessions would improve his movements and allow him to be more independent. So that he could sit up on his own coming from bed in the morning. So he could sit straight longer. So he could extend his leg even while in a sitting position. All the basics that we tend to ignore but a struggle to kids like him.

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Mood: 2/10 Honks! (Sleepy but this is worth it.)

Climb

My time in front of the PC spilled over the weekend as I made myself useful and productive by helping out wifey with her work. Then also queueing are years of old blog posts to be migrated AND edited at the same time. I can see this same pattern happening in the weeks to come and it’s a good thing that switching from one PC to another would at least be minimized as I have once again started using Dropbox. I didn’t really appreciate the application the last time I used it on our desktop about a year or so ago but now that I have a phone that could handle more apps then I’m giving it another try. That picture of Marcus dated three years ago showing him climbing the ladder is one of the files I discovered hidden among my folders. Sigh.

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Mood: 5/10 Honks! (This left leg could be a challenge this week. Hope it gets better before the weekend so I could keep running.)

Frail

The afternoons are for cats. Marcus with Tiger.

There are things that are hard to deny, things that its progression can’t be stopped. Such is the case in Marcus’ condition. This week he felt pain on his right calf after I got him out of bed—this was the first time we’ve heard him complain about it. Every morning I get him out of bed, with his permission, by grabbing his feet. This gets his whole legs stretched besides the regular massage I give him. All the while we never had any issues except occasional request for him to stay few minutes more in bed. Concerned about the pain, I made sure since then that I pull him out by holding either on his upper legs or arms. I am more careful this time.

The good news is that Marcus still maintains a happy disposition. He smiles often and is even good at making anyone laugh at his antics and stories. He is a natural joker, he likes making his own impression of me and wifey and it cracks me up all the time. He would also share his amusing thoughts every now and then.

Despite stuck in his computer games almost the whole day every day, he continues to surprise us whenever he speaks up. “Mommy, I want to build a time machine,” he said to her one evening while preparing to sleep. “Why?” asked wifey. “So that I could go back to when I could still walk.” He also wishes to go as far back as the biblical times so he could talk to Jesus about getting healed just like in the stories from his first bible book.

He likes to make himself useful. He just finished placing stuffs in the fridge.

His mindset too has changed. If in the past he would have a big no for an answer to the idea of being a big brother, this time he reconsiders. With some conditions. “Mommy, I want you to adopt a baby girl. She should have the same complexion like mine,” he told wifey one night. “But I don’t want her to call me brother. I want to be called ‘hero’,” he added. On that same night he sent me a text message with the same demand. (It was a welcome relief from listening to awkward calls recordings.) That Xbox SIMS game he’s been playing is blessing and a curse—it made him embrace the idea of adoption.

Friends and relatives who know our stories would commend us for being strong parents. Well sometimes we are but sometimes we try hard to be–we need to. Marcus’ condition will continue unless technology makes significant findings to slow it down or better yet stop it for good. Whatever happens, we commit to continue to hold on to each other’s strengths so that we fill in each other’s weaknesses. We are hoping he won’t get frail any further soon.

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WordPress updates have been a handful lately. Every time there is a new update I would encounter a new error. This time was about FileZilla blocking most files that led me to discover an alternative–WinSCP–and it works like a charm. The interface was so simple that I was able to make wifey and Marcus update the files.

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My fans, 5 or 6 of them, were having a hard time opening this blog site when using their phones but thanks to a plugin called WPtouch the site is now mobile friendly.

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Mood: 1/10 Honks! (Exactly one more week…)