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.)

 

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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.)