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)

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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.

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

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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.

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

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.

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

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…

 

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Lyrics from azlyrics.com

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