Mondays and Uphills

The just concluded long weekend due to the holy week was worth it. Didn’t get us far from home but it gave me a chance to just bond with wifey and Marcus. This video of the goats playing around and showing off to Marcus was captured on a Good Friday at the first stopover on our attempt to get closer to Mount Makiling. We live nearby so no big deal but take note that Marcus is in a wheelchair.

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Mount Makiling is one of the regular Holy Week destinations for those who want to make their own sacrifices or for mountaineers who want to climb something challenging but not far from the city. The last time I was up there was about 20 years ago before I got married and when a good stretch of the road to the mountain wasn’t paved yet. Now it’s a bit wheelchair-friendly.

That’s Mt. Makiling in the background taken after we made a bad turn finding a relative’s farm.

Who needs 4×4?
We reached the farm. Technically, these kids are Marcus’ cuz.
On our way back down. This is the steepest we’ve reached so letting Marcus’ wheelchair roll freely was impossible.

Next time we will try farther. And yes, next time we’ll wear something warmer.

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Mood: 2/10 Honks! (Just a day at work then another off for me.)

Heavy

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Any break is routine is always welcome. Like Saturday’s. More than a month ago I seem to have injured my left leg having started running cold. I had it massaged once but the pain seems to linger although not as much. My wife suspects it’s something to do with uric acidicity, I think it’s about my 10 pounds excess weight. So yesterday I had it massaged again this time in a place that reminds me of no spa but of my old bed space days. Surprisingly, my co-worker who moonlights as a massage therapist can do better service than most I’ve had. Hope to get back to running again in a few weeks.

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Mood: 3/10 Honks! (Today we’ll try to send Marcus’ blood abroad.)

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.)

Moving On

What seems like in a snap of a finger, we find ourselves staring at 2017.  Now we once again wonder what this new year has in store for us with all hopes up that it would be better than its preceding year. In our books, 2016 is hard to beat especially that its last days ended with a bang. But after three weeks of living the life in the land of milk and honey, our life goes back to normal.  We have returned home, we move on.

Meeting 2017 at Old Sacramento.

Yes, we move on. One tall order after one unique travel experience. In the next days we merge back to the rat race–like it or not. In Marcus’ case, however, moving on is a pun and at the same time a big dream. And time is of the essence. This year we need to execute what we have regularly discussed between pauses during our American adventure. Our good hosts, my sister and her hubby, want to see Marcus undergo the next phase of DMD testing. They pledged to support it.

Kid in America.

To say we were happy at their commitment would be an understatement. DMD is one of those medical conditions that is expensive to deal with despite the uncertainty of success.  With the much needed support we can now proceed and see if the available DMD drug in the market would be of benefit to Marcus. So as early as this January we’ll be busy. It’s time we see the doctor again. Fingers crossed.

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Marcus is among those in wheelchairs waiting to board the plane from Manila. He is the only child.

We continue to realize the challenge of travelling with someone in a wheelchair. Not that we are complaining but its a struggle we have to face. This is why I didn’t have any issues staying at my sister’s home and just enjoy time with everyone. I just know that Marcus preferred it that way too.

Even within the confines of the house there’s always something to keep us occupied anyway: gym, pets, TV, toys, food. They are also fond of non-smartphones games like Uno and Jenga. And it was where I learned my second card game (Trump cards is first) while Marcus proved he can play the latter.

He’s got steady hands.

Marcus once mentioned that he has seen how Jenga is played but we never saw him play the actual game not until this trip. To the surprise of everyone, he was a natural. He picked Jenga blocks on his own although I carried and assisted him to be able to place the blocks when the stack got higher. His dexterity to handle the blocks gave me some sort of hope. It proves that after all his remaining muscle functions may be preserved somehow.  Let’s see.

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Mood: 2/10 Honks! (Now using Marcus’ HP PC which we fixed ourselves. Thanks to the male Santa.)

 

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…)