Parenting – Page 8 – Marcus Can Blog

Parenting A Kid With A Condition

“Love beyond your comfort zone.” – Homily, LaSalette priest

Any mother or father will likely agree that parenting is the toughest job ever. Man can control machines he designed. Man can control—not to mention fire—people he hired. Man can manage the business he started. Name it, man has learned to place controls on almost anything except probably nature and kids (and if I may add, the Philippines’ railway system). So far there isn’t an exact parenting blueprint that applies to all.

Parenting is and will always remain relatively tough. Technology can only do so much to aid any parent in controlling kids. Come to think of it, technology may have even added to the challenge of parental control. Show me an app that is proven to improve parenting and I promise to thank you later.

Then there’s that other factor.

If parenting a normal or an average child is already tough, more so being a mother or father of someone with a condition. The dilemma to discipline or to cut the child some slack comes into the picture.

This is how we now feel with Marcus. I consider myself a disciplinarian and my wife knows that I wouldn’t pass on an opportunity to lecture our kid. However, with us discovering that he has DMD made me step back. It makes me wonder though if such is a good idea after all. Marcus now spends longer time with his gadgets and games. He is not forced to wake up early. He is not required to run around to exercise. We stopped playing football in our yard. We even have to forget–completely–about biking around the village. In short, lesser physical activities to avoid getting him stressed out.

Chances are all these changes surprised him but I fear that it also spoiled him more because everything is now on his favor, under his own terms. I realize that this is where things could start to go wrong in the long run. So however hard it may seem, I can’t allow it to happen. A balance must be established back in some way.

How we should strike a balanced parenting with his condition factored in is something we are still trying to figure out. I believe that appropriate parenting should continue so that when that time comes we have already built a good foundation where our future relationship depends.

For now we continue to treat him as a normal kid as much as we can. While we can see that he is starting to wonder why he is not as agile as most kids do, we haven’t told him everything yet. He is still a kid who is restless, one who likes to move around whenever he feels like doing so. We can only advise but we do not suppress movement as long as we see that it won’t tire him out and make him fall uncontrollably.

Pepperoni is mine. (Photo taken by wifey @ Shakey’s)

***

“Serious ka na naman! (You look serious again!)” is Marcus’ new statement. First heard it after he caught me too focused on our Call of Duty game.

***

Mood: 3/10 Honks! (When you listen, you learn.)

Saturdays with Needles

It has been a week since I got inked for the very first time and as most people who do it, there is an inspiration behind each tattoo. Mine comes from Marcus and one of his favorite games, Minecraft.

That’s Minecraft’s Steve on my left chest.

The tattoo shop’s size and ambiance were not close to those of Miami Ink–a show that wifey and I used to watch back when we still have cable TV. However, I know that the experience I felt that day was the same as anyone who had their tattoo for the first time. It was a mixture of pain, excitement, and the dilemma if I could still back out and say “forget it.”

Same cannot be told of Marcus’ day with a different needle. Today, we finally accomplished his first test–among several ordered by his doctor–that requires blood extraction for CKMM which is a procedure that will determine the extent of damage to his muscles. Watching him cry was painful but what breaks my heart more was his question after the extraction, “Daddy, would I be able to jump soon?” Result comes out this Monday.

Marcus with Yaya (known to others as Frankenbob) thru good times and bad times. There’s my next tattoo idea.

***

Mood: 5/10 Honks! (Still wondering why him.)

Are Tablets Good for Children?

April 23, Thursday. We were in a developmental pediatrician’s clinic. Our main purpose that day was to have Marcus checked for his unexplained frailty–he falls, he trips for no apparent reason. And among the factors we believed that contribute to his abnormal condition is just his lack of physical activities compared with other children of his age.

Immediately after being checked by the doctor, Marcus went to his cousin who is seated just across the doctor’s desk. Jed was occupied with Minecraft (they have been playing this game most of the time since day one of Jed’s one-week vacation) on our PLDT Telpad. They were quiet–as I have advised them–but the gadget captured the doctor’s attention. We didn’t expect what she said next.

“Were you ever aware about the effect of that gadget to your kid?” the doctor asked. “We’ll I’ve read about it,” I replied defensively. Obviously, she has a lot more to say about it, she went on with her lecture.

According to her, these gadgets impact our children big time. Kids nowadays who start to learn, some as young as six months old, how to use smartphones and tablets exhibit at least one of the following characteristics: impatience, short attention span, excessively possessive, and snaps easily. She added that electronic gadgets have been observed to cause ADHD and even trigger autism. While she was spot on regarding the characteristics–it was everything we have observed from Marcus, I was skeptic about ADHD and autism.

Nevertheless I swear that day that there will be lesser gadget time for Marcus. I felt more convinced that he needs to get more physical activity. I thought it was time to pump his green bike back to life. But it was a plan that would change quickly the following day.

Are smartphones and tablets good for children then? Given the effects of these gadgets, would we want to keep our kids away from them? Of course, this where parenting comes in. The key here is appropriate control as well as being good role models. Parents must also have the awareness that different kids have different needs which for my wife and I right now is the most important thing.

After April 23 we are back to allowing Marcus to have more gadget time. My wife and I have agreed that we will not force him anymore to get engaged in physical activities. We will let him play Minecraft more where he can build his own world and move around any terrain without falling down, without getting hurt. The doctor won’t probably understand but hopefully someday she will.

***

Mood: 7/10 Honks! (This toothache is killing me.)

Lift Marcus

I am on my second year of frequenting the gym a lot more than before. My personal goal when I started once again to sweating it off in the gym was just like anyone else–try to burn fat. Just that. Besides it was either I kill time reading a book or lifting weights at the gym right across Marcus’ school while I wait for him to step out of his class.

Recent turn of events, however, changed everything. The goal now is to become stronger physically as well as mentally and spiritually. For the three of us, for Marcus. Time has been ticking, time will come to lift Marcus. When that time comes, God willing, we should be ready.

***

Mood: 2/10 Honks! (We draw our strength from prayers, from everyone.)

Why I am For Embryo Editing

There are things happening around us that we tend to ignore and it is perfectly normal. We only care if something affects us–the economy, gadgets, car models, fashion, entertainment, career, etc. In our health-conscious world, we also would talk about fitness in general. Everyone considers activities like going to the gym, start running, and acquiring that first bike. The concerns of the average Joes, at the very least.

If you belong to this crowd, then you are lucky. It means that you are gifted with a sound mind and body that allows you to be involved in normal physical activities.

But not everyone can be physically active, let alone do simple tasks. For some people, simply standing up or talking small steps are challenging enough. Like children with muscular dystrophy, specifically Duchenne Muscular Dystrophy or DMD.

Children with DMD are innocent victims of a genetic disorder. According to online resources, DMD is caused by a damaged or mutated dystrophin gene on the X chromosomes resulting to the muscles not to develop properly and, worse, to degrade over time. DMD will cripple anyone at a very young age.

So what if science can correct this problem? What if there is a way to edit the genetic code so that a normal baby comes out. Would you approve? Do you think God will approve?

Yes, there will always be questions regarding the ethics of tweaking the genes. Lots of it actually. The fear of having only perfect babies will always linger. The thought about something similar to the Nazi’s genocide happening all over again or even imagine the fictional movie Gattaca becoming real would surface. Will this breakthrough eventually result to inhumane elimination of the weak and anyone with inferior genes? What a scary thought, right?

There are chances though that some are willing to take. These are the people who are in this situation. Those who are, and their loved ones, inflicted with a disorder that science currently have not resolved. They are people who are the intended beneficiaries of the cure that are still in the works. They are the ones who, while scientists experiment with animals and while lawmakers debate on ethics, continue to suffer and with time working against them.

It won’t be a big surprise though to learn that not everyone will agree to embryo editing. For one, this may contradict religious beliefs as it could be seen as playing God. There will always be people who would not want to oppose the will of God. There are people who believe in nothing but divine miracles. But what if embryo editing is the miracle that we have been waiting for?

For me, this is a miracle. It may be selfish for me to wish Marcus could have avoided DMD, as the doctor has recently diagnosed, had embryo editing been available before and to not think about the long-term impact of the technology in case some scientists dare to push the envelop. We are that desperate right now and our immediate concern is for a cure to ultimately produce healthy babies as well as cure those with genetic disorder so that they could be just like most of us, regular Joes.

***

Mood: 4/10 Honks! (In Batangas, Marcus with his tablet.)

When a Macklemore Song Becomes a Sad Song

…Can we go back, this is the moment

Tonight is the night, we’ll fight ’til it’s over

So we put our hands up like the ceiling can’t hold us

Like the ceiling can’t hold us…

These are a couple of lyrics from the Macklemore song Can’t Hold Us and it is one of Marcus’ favorite songs. It played when I was warming up in the gym yesterday. It was supposed to pump up my mind and body as it always does. It is just like its effect on Marcus every time he views this one YouTube montage of Halo. He goes crazy, he dances. Yes, it is a song that he introduced to me and I have come to loved as well.

Saturday’s gym session, however, was different. I was pedaling while I was holding back from crying. I could have let go of my tears and made it mix with my own sweat which are starting to drip on the rubber floor but I couldn’t. I’m in a gym. Men do not cry inside the gym unless maybe they got hit by a dumbbell.

The song eventually ended and I was able to move on. It was so far the saddest stationary bike warm up I ever had but I know that I will have the same feeling again in the next days if I hear the same song again. It would make me imagine the Halo characters in that montage where all are mighty and brave, all are strong and muscular, everyone fast and invincible. Marcus likes them. Marcus wants to be one of them.

Last Friday we learned that this will not happen.

Our second visit to another doctor this week made us discover that Marcus all along has Duchenne muscular dystrophy (DMD). This condition is a genetic problem that results to progressive muscular wasting that causes all the muscles—the heart included—to fail at some point. What got us so devastated was when the doctor confirmed what I have read from the article that wifey posted on my facebook private message—DMD does not have any cure for now.

Muscles of people with DMD weaken over time. We now understand why Marcus at age seven still cannot run just like the other kids. He cannot climb stairs. He cannot stand up on his own. He falls for no reason. And it is not his fault—never was. I now feel guilty expecting too much from him and forcing him to run just so he becomes the hero he wants to be. I have required him to run inside the house every time his Xbox timer expires. We once all thought that he just lacks exercise.

Our awareness to his condition hit us. Suddenly everything changed–our plans, our focus, our dreams, our faith. I know things will be different in the next days, in the next years. But DMD can’t hold us. Should not hold us.

…Return of the Mack, get up!

What it is, what it does, what it is, what it isn’t.

Looking for a better way to get up out of bed…

***

Lyrics from azlyrics.com

***

Mood: 9/10 Honks! (Lord, make us strong.)

The Spongebob Dilemma

Uh oh. A week to go and kiddo will celebrate his birthday and its theme is SpongeBob. At age seven he has started to hate past favorites. He has bid goodbye to Mickey Mouse, Dibo, Barney (this I welcome), Ben 10, and Jollibee. Almost everything he used to be so fond of. But SpongeBob stays–Oggy and Lego too.

I now wonder how he will react once he learns that Jollibee now has free SpongeBob movie figures (we watched The SpongeBob Movie: Sponge Out of Water on Black Saturday) for their kiddie meals. Will he ask us to cross the road, grab kiddie meals and have it served during his birthday party at McDonald’s? We’ll know.

Check out @Jollibee’s Tweet: https://twitter.com/Jollibee/status/585659675640782851?s=09

***

Mood: 2/10 Honks! (One cold pan de sal at a time.)

Got Coins?

So you got your piggy bank filled and you begin to think it’s about time you break it. The pictures on TV commercials now play in your mind where a pink ceramic piggy is carried to the bank and pleasant-looking tellers welcoming their excited client. But snap out of it, it is fallacy because the sad truth is, they hate counting coins. Yes, most bank tellers—who appear so kind, so accommodating—do not like to spend time counting what we have been saving in our coin banks for months. I know this first hand based on experiences (yup, plural).

One of my encounters happened a few months back. I went to a BDO branch where a big image on their wall had my hopes high—it has a picture of a kid with her tower of coins. She seems happy, so proud of her savings. Soon I learned, however, that the teller in front of me thinks otherwise. Her happy disposition changed in a heartbeat when I told her I will deposit Marcus’ coins to his account. It was worth more than three thousand pesos.

While she counts, after a stern comment that I should have grouped it by hundreds, I looked at the huge wall again and had to suppress a smirk and the urge to let out some sarcasm. That day reminds me to avoid depositing coins again—that is, if I can help it.

Not wanting to be in the same uneasy spot again, this week I have found another way to dispense Marcus’ coins. It doesn’t involve any bank tellers but new unsuspecting employees. The first recipient was the water district’s cashier. Surprisingly, he didn’t complain and was able to count the 80 pieces of 5-peso coins fast. Kiddo and I were out of the office in less than ten minutes.

Our next stop was the gas station. I handed the attendant six ice candy packs with 1-peso coins in each. I packed it last weekend—while watching a Transformers movie at home—and was thinking all the while that I got 600 all in all. How he verified that I counted it wrong surprised me. The gas attendant told me that each pack only has 50 pesos just by placing it on his palm. Wow, this guy should be working at a bank and replace those smug bank tellers so I can go back to depositing the coins directly to Marcus’ savings account.

I still have few more hundred pesos worth of coins to expend and by the time every coin is gone I already owe our kid at least two thousand pesos (Lucky kid). How I now wish that the coin hoarding bill will soon become a law so that I can march back to the bank proudly and tell the bank tellers, “You know ma’am, I am just abiding by the law, so please spare me the lecture and start counting the 25 centavos first.”

***

Mood: 4/10 Honks! (Those coins are lifesavers for now.)

What’s The Plan?

Our cat I suspect is now in heat and it follows, from my little understanding of our furry friends, that male cats nearby can detect it. In the recent weeks, the three of us at home have been fending off cats who pay our pet a purposeful visit and Marcus has been the most active in this duty of preventing any of those visitors from hooking up with our calico. Today our son comes up with a plan and it’s the first time I heard him refer to something he has drawn.

***

Mood: 3/10 Honks! (I hope that this is Marcus’ day 2 of playing with our neighbor’s kid. He badly needs outdoor activities–other than spraying cats.)

Hello Halo

Two years ago a friend of wifey gave Marcus toys he brought from Canada. One of those is a box of buildings blocks which would have been perfect for him since he’s already into Lego–he got his first Duplo from my sis–but the age label on the box says 8+ so we decided to keep it.

Halo toys. Sometime around midnight, 8/16/14.

Yesterday, dropping by SM with the main intent to get a replacement for wifey’s laptop charger that our cat chewed, Marcus kept on asking me to buy him a toy. I gave a condition–as long as it is cheap but as expected, the ones he wants aren’t. He pointed at an Iron Man action figure, a battery-operated gun, and like a good hound dog, ended at the spots where there is a Halo 4 XBox game and other Halo merchandises. “Marcus, all those have four numbers after the P sign on the price tag. We can’t buy them now,” I tried my best to stress on ‘now.’ He surrendered and obediently followed back to the parking lot after I told him that I have something in store at home.

All the while since I wrapped the building blocks box in black plastic bag I was thinking that it’s a Transformers robot. When I opened the traveling bag where it was hidden it was then that I realized it’s a Mega Bloks Halo 96869 Covenant Brute Prowler set. You can just imagine his surprise–it was the perfect toy for his favorite game. Thanks to it, we killed more Covenant that night.

***

Mood: 3/10 Honks! (It will take some convincing to get him to review for exam tomorrow.)