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.

***

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

***

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

 

Christmas S_cks

Second to the last for this sock.

Depends on who you ask, the idea of Christmas could differ. For most kids, it’s all about Christmas socks. For most adults, it’s Christmas sucks and that is just sad. It is why it pays to be a kid or a kid at heart this holiday season. It’s about setting aside all that pride and prejudice that hinder the true spirit of Christmas. It’s about having that innocence, at least for the time being.

Christmas is the perfect time to once again believe in Santa because Santa does exist. Baloney? Grinch, eh? Hear this. You see kids do not have a strong grasp of the origin of Christmas yet and so it takes some creativity to enforce to them the reward system–what one gets when he’s naughty or nice. And this is when Santa Claus comes to the rescue. With his sleigh and reindeer. With Rudolph the red-nosed leader. Remember that even Jesus made use of parables to get his message across. To use therefore a fat bearded man in a red suit who tirelessly shouts ho, ho, ho isn’t really a bad thing. Given the right parenting and faith, kids will soon understand the real reason behind this season. For now let’s allow Santa Claus to fill those Christmas socks.

***

I have to stressed most kids in the statement. There are others out there with an empty Christmas socks as the least of their worries. Let’s spare a thought and a prayer for them.

***

Mood: 1/10 Honks! (One more day and Marcus’ dream will come true.)

 

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.

***

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.

***

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.

***

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

 

A Bit Scary Bits

Don’t let your fear paralyze you. The scariest paths often lead you to the most exciting places. – Lori Deschene

Hello 2016, you’re almost over. As we flip our calendars to November we also celebrate wifey’s birthday. This year though is a lot more special for today she reaches that phase when life they say begins–she’s now 40! We find it always funny that it happens at the very same time when everyone flocks to the cemeteries to pay respect to their dear departed. Anyway, happy birthday to you milove and may God bless you with better health and longer life ahead. For one, Marcus and I need someone to cook for us.

***

This is usually the week when scary stories and TV shows come around. I recall those years when we would get glued in front of Magandang Gabi Bayan’s Halloween episode but the fact that we now know videos can get manipulated has made me a lesser fan of any similar shows. Some current events news are much scarier lately–EJK, anyone?

***

Our compound was empty as everyone paid a visit to my sister-in-law’s grave so it’s just Marcus and I for several hours. After dropping off wifey at the cemetery, I briefly left Marcus in the tub and suddenly a shriek echoed. I rushed back to see Marcus staring not at a zombie but at a harmless spider on the wall. It made me recall wifey’s story about the other DMD mom’s observation that their sons too freak out at the sight of insects and spiders. Maybe it’s that feeling of not being able to run or at least walk away that makes them feel scared of those crawly creepers. Makes sense to me now.

***

Wifey has this weird habit of staying until the midnight to welcome her birthday but last night she fell asleep early–didn’t text her as I was on training. Hehe. Soon she felt someone shaking her. It was from someone with a pair of tiny cold hands. It was Marcus. Being a late sleeper, he waited for the clock’s two fingers to strike 12 so that he can greet her happy birthday. See it’s not all about scary stuff for today’s blog post. Sweet.

***

That quote on top by the way is from Twitter. Yup, about a year or so of hiatus I’m starting to check it out again. I feel I’m being called to report for keyboard warrior duty. Be scared.

I’m scary even without a mask. (Taken in Bacolod two years ago.)

***
Mood: 2/10 Honks! (Two days off.)

A Gathering of Kids in Wheelchairs

First meeting with the DMD Moms. (Picture posted with permission.)

In a matter of one week after we joined the FB group DMD Moms the meeting happened. On Saturday, October 8, a couple of members made it to Waltermart Makiling and it probably was one of the few times, if not the only time, this Kuya J resto location witnessed a meeting of kids in wheelchairs with their moms and dads.

Since we learned about our kid’s condition more than a year ago, this our first time to come face to face with other parents who have chosen to meet the challenge head on. These are parents, moms especially, who stared at their young boys’ dystrophy straight in the eye and commit to make the lives of their kids better against all odds.

It was a surprise that Marcus was relatively behaved. Days prior to this meeting he was so anxious, he has lots of questions. He also expressed that he plans to just wave, say hi, and shut up. But he didn’t. He interacted with almost everyone, parents and kids alike. There were some awkward moments though like when he cried when he saw the cooked shrimps—he doesn’t like to learn about animals being killed and cooked but he eats fried chicken. SSShhh. He also refused to answer some questions referring to our constant reminder not to talk to strangers. After some explanations, he got along well with the others.

We hope that this isn’t the first and the last meeting. Like any other conditions, it pays to have a support group, a group who perfectly understand what the others are going through and could possibly help one way or another. At least Marcus now knows that after all he is not alone and that he could actually have friends aside from those in school and his cousins. Kudos by the way to the crew of Kuya J for being accommodating and understanding. They even honored the individual PWD cards that we presented. Facility of this branch is also great besides tables that could have been much more wheelchair-friendly.

***

Picture was taken exactly a year ago at the gym where I used to workout.

Mood: 2/10 Honks! (Wifey solved my network problem. Two heads are better than one.)

DMD Moms

It was another well-deserved Saturday morning when a notification icon on my new phone shows a red number beside it. Sooner I realized it is from the Messenger app and when I opened it there were like 5-8 messages waiting to be read. Some more than a year old already, some from people I know, others from people I choose to continue to ignore. But there’s one that caught my attention the most. It was from someone I had a chat with more than a month ago using our laptop, she invited me to join their Facebook group. I would normally shy away from such invites but this time I eagerly agreed.

It was DMD Moms. As the name implies, the group is mostly composed of moms of kids with DMD just like Marcus. This is our second online contact with others who have the same case as we do. The first one was Muscle Dystrophy Philippines but DMD Moms seems more personal and active–one you would expect when you gather a group of chatty moms. That same day, I informed wifey about it and in no time she joined the group as well.

While being the latest members of the group, it didn’t take long before we see familiar stories. Stories of despair, stories of strength, stories of hope, stories of love and commitment. According to the one who invited me, the group has currently less than 30 members, us included. We also learned that some are located close to where we live so a meeting could soon happen and when it does, it would be the first time Marcus would meet someone who also has DMD. We are looking forward to it.

***

For the second time, I got a new phone courtesy of wifey. While I’m waiting for the MyPhone store to replenish its Rio batteries, wifey had secretly ordered something from Lazada. So here’s me with a new Flash Plus 2 which is more than enough to run my Kindle. Well, it made me discover the benefits of the Facebook  and Messenger apps. Oh, I tried some selfie while alone at work but camera didn’t make me look good. I wonder if there’s like Photoshop or the popular beautify setting like what most of my Facebook friends use. You’ll know when I found it. Out of the box, it’s a good phone so far.

***

Mood: 3/10 Honks! (Pain on my right back is almost gone.)

DMD Moms

​It was another well-deserved Saturday morning when a notification icon on my new phone shows a red number beside it. Sooner I realized it is from the Messenger app and when I opened it there were like 5-8 messages waiting to be read. Some more than a year old already, some from people I know, others from people I choose to continue to ignore. But there’s one that caught my attention the most. It was from someone I had a chat with more than a month ago using our laptop, she invited me to join their Facebook group. I would normally shy away from such invites but this time I eagerly agreed.

It was DMD Moms. As the name implies, the group is mostly composed of moms of kids with DMD just like Marcus. This is our second online contact with others who have the same case as we do. The first one was Muscle Dystrophy Philippines but DMD Moms seems more personal and active–one you would expect when you gather a group of chatty moms. That same day, I informed wifey about it and in no time joined the group as well.

While being the latest members of the group, it didn’t take long before we see familiar stories. Stories of despair, stories of strength, stories of hope, stories of love and commitment. According to the one who invited me, the group has currently less than 30 members, us included. We also learned that some are located close to where we live so a meeting could soon happen and when it does, it would be the first time Marcus would meet someone who also has DMD. We are looking forward to it.
***
For the second time, I got a new phone courtesy of wifey. While I’m waiting for the MyPhone store to replenish its Rio batteries, wifey had secretly ordered something from Lazada. So here’s me with a new Flash Plus 2 which is more than enough to run my Kindle. Well, it made me discover the benefits of the Facebook  and Messenger apps. Oh, I tried some selfie while alone at work but camera didn’t make me look good. I wonder if there’s like Photoshop or the popular beautify setting like what most of my Facebook friends use. You’ll know when I found it. Out of the box, it’s a good phone so far.
***

Mood: 3/10 Honks! (Pain on my right back is almost gone.)

The (tough) challenge to turn minimalist

My current focus has been on the path of being a minimalist. It’s not that I live a complicated lifestyle, full of stuffs to flaunt or experiences worthy of a Facebook or Instagram post. I’m not one of those but I feel that there are still opportunities to declutter and make my life simpler yet fuller—the basic philosophy of minimalism. Thankfully, the transition is made easier as there seems to be a trend and resources to face this challenge as what I have found mostly on Becoming Minimalist.

Do not be fooled though, for decluttering is a big word. It does not only mean disposing physical objects like decades of magazines, baby toys, used clothes, gadgets, etcetera, but it also means dealing with emotional burdens like grudges, lost opportunities and anxieties, whether due to attachments to things we cherish the most or for some other reasons, that hold us back from moving forward and achieving a life that’s less stuffy.

The need to face this challenge head on started to become more serious when we decided to transfer to another house. I was hit with a realization that we have things at home that have either never used or that we will never ever need. This despite giving away clothes regularly when we hear on TV about people needing some due to typhoon or fire. We’ve also given away some of our son’s old toys on trick or treat days or on Christmas seasons. Still it seems that those weren’t enough.

Except for movable things like the stand fan and a turtle in the basin, this area remains clear like on our first days. I have also blocked my wife’s plan to buy a stationary bike.

So when we eventually got settled in our current house, I made sure that more unnecessary stuffs will have to go—having no shelf or extra cabinet helped in the decision making. So far I have given away paperbacks that I once find hard to dispose due to sentimental reasons. Marcus has also agreed to say goodbye to some of his old McDonald’s happy meal toys and Duplos. Wedding gifts like tea sets, plates, glass bowls and the likes were also given away with wifey’s permission. Every one of us did our part in clearing the tangibles and make the house clean and wheelchair-friendly.

Some of the books that have once made me occupied in the parking lot have been given away. I’m now using Kindle.

Clearing the mind of anxieties, however, is a tougher enemy and is an ongoing battle. To let go of what-would/could-have-beens is often hard to shake off. While I have started to get used to look at Marcus straight in the eye when I reassure him that not being able to walk shouldn’t be a big deal, I would sometimes catch myself seeing images of him once walking naturally and him running around and enjoying an active life as an adult.  But maybe it’s the life that isn’t meant to be and acceptance means changing sail and let fate take its course.

Yesterday, during the homily the priest made the perfect reminder. He said that human as we are, we tend to easily forget that what we currently have are all temporary; worse, we become so selfish that we refuse to share to those that need the most. That was spot on.

I know that what I try to achieve in a world of consumerism and self-centeredness is a feat full of obstacles. The temptation to give in is always present so focus to the goal is key. Honestly, I do not know when I would achieve minimalism or if there is even such point, but I am willing to take on the challenge and see how far I could let go of clutters so as to live life as it should be lived.

***

This was tough parenting week for us. Marcus has been playing this online Minecraft game called Skywars. He claims that there are banable offenses like hacking and teaming up that results to him getting killed unfairly. When it happens he get so frustrated yet the more he wants to get even. And one frustration leads to another—me included. To prevent this from happening again, I uninstalled his Minecraft PC application in front of him and eventually his user account just to realize soon that I shouldn’t have done it. Anyway, it surprises me that he recovered sooner that I thought and it’s as if nothing happened to the game he loves the most. Maybe he would be a better at letting go than I would ever be.

***

Mood: 3/10 Honks! (Letting go of my comfort job.)

There is a Turtle in Us

 

There is a turtle in all of us. Well, at least that’s how it now appears to be in our case.  More than a week ago my wife and I watched on Umagang Kay Ganda a segment wherein they featured turtles for pets and when we told Marcus about it, the next days that followed was filled with questions “Where do I get a turtle?”, “When can I have a turtle?”, and similar other questions with the word turtle in it.  So yesterday was the day we found and bought one and achieved peace. How happy was Marcus? We got a couple of goodnight hugs from him which rarely happens.

Rafael meets Raphael.

Somewhere in Bacolod, however, one was obviously not a big fan of turtles. Over the phone this morning, I told my mother the good news that we finally got a pet for Marcus. A pet that doesn’t have a fur that could trigger allergic reactions. But to confirm the suspicion I had since I was in high school, she immediately advised that the turtle shouldn’t be kept inside the house as people say it makes the life of anyone who has it slow. That flashed me back in time when I found one crawling in our backyard that I kept in our toilet while I try to find the right box for it. That turtle which was about the size of a saucer disappeared without a trace when I returned to check it. My mother said it must have escaped but our toilet had walls of slippery white tiles and a small window above five feet plus I knew I closed the door just before I left. I wasn’t given the chance to name the turtle Houdini.

To entertain my mother’s opinion on this innocent reptile and just to make that mother-knows-best notion true, my career path has been indeed a drag. Could be the effect of keeping, while briefly, a turtle or could be due to me being contented of what I have or could be due to the workplace environment where I am currently at. The safest to blame would be the turtle. Anyway, after years of trying to move on and positioning myself on the next step of the career ladder, I landed the job I least expected to get. It was turtle-pace movement but I’d take it. I learned about the good news just a day before our account celebrated its fifth year this weekend.

Oh, yes, Marcus named the turtle of course. It’s now called Raphael. It costs us 450 pesos to get it so we need to save before we get another of his cowabunga friends.

***

Among yesterday’s mall itinerary was to watch a movie and the perfect film on the day we get a new pet is no other than Secret Life of Pets.  It is about the story of what pets do the moment their busy owners step out of the door to resume their busy life in New York. As an adult I would say that this is among those many films with its trailer far more entertaining that the full movie itself but looking at how Marcus decided to stay put in his wheelchair—he gets an unimpeded view of the screen from the isle—instead of on my lap during the entirety of the movie tells me that he enjoyed it. And as usually the case, an animated film for kids is meant to be just that. For kids.

***

Mood: 2/10 Honks! (Expecting a long day with the turtle.)

Not All Light Bulb Moments Come Out As Bright Ideas

Ever had one of those days when that bulb inside your head lights up and you believe that you just struck the best idea? Then you smile and feel good about yourself, you feel smarter than the rest. But sometimes, things do not come out as planned. It is not because you happen to be one of the regular joes who lack the resources to get your light bulb idea materialize. Even corporations who probably have the right research and development budget are not spared from such failures. Countless of seemingly promising products have flopped just because it missed to deliver its intended purpose.

A smiling plunger, anyone? (Image from Mentalfloss.com)

In July, besides Pokemon Go, another company revealed to the world their design of a toilet plunger that they think would be effective and at the same time make the task fun than it is supposed to be. I was already skeptic at the latter despite the product’s integrated poop shape and emoji-inspired design but I smirked more about it being effective. Called the Poo-Plunger, it promises to solve the crappy job of sending that thing down the drain in no time. The article says that the product’s designer are into crowdfunding to support the project. I salute their effort to donate some of the proceeds to charity but my fascination of their idea stops there.

Why such hatred? Well, we had a similar product at home. One of the links I marked as favorite was an article 18 Everyday Products You’ve Been Using Wrong which I read three years ago and when we finally transferred house I made sure that I buy the right toilet plunger. Marcus wasn’t a fan of drinking water so every now and then we would encounter that problem in the toilet. We’ve tried fibrous diet but we keep on being face to face with that thing. So I thought that maybe there’s a solution and I seem to finally have found the right tool. I was wrong.

The design is deceiving.

Theoretically the plunger should work.  Create a good seal, pump the plunger and let the air in its bellow send the hideous stuff down the drain. Simple, right? Yes, if and only if you get the thing pushed down in the first try. Miss it and you will soon realize that when you retract the plunger, everything that’s left is sucked back in the empty space of the plunger—think of an empty medicine dropper that you dip in a bottle. The gurgling sound it makes is nightmare material. The description ‘as scary as  shit’ would be technical.  We’re now back to encouraging Marcus to eat oatmeal and vegetables.

So do not feel bad if ever you failed to make your bright ideas come to life. Do not rush. Be happy to push it back and go back once again to the drawing board unless you secretly plan to make someone other people’s lives more crappy as a result of your half-baked light bulb moment. Now I wonder if the makers of the Poo-Plunger have their own nine-digit number. I might check later.

***

Mood: 4/10 Honks! (Blame the article on the weather.)