How Do You Explain Anger

At a very young age, kids start to feel and experience a lot of emotions, anger included. When present within their environment, anger could be absorbed by their very innocent minds and it starts to build up ready to be expressed when the right time comes. This we learned recently.

Days after our car got rear-ended by a motorcycle, Marcus asked his mother, “Mommy, why does daddy get angry when driving?” I didn’t ask my wife whether our son used the adverb ‘sometimes’ or ‘always’ to describe the frequency but the news struck me—and I seem to know the answer anyway.  Marcus who has been allowed in the front passenger seat since he turned seven was not only there to enjoy the view but was after all observing my emotions as well.  Driving must be making people angry so for this same reason he does not want to drive in the future anymore.

I have not offered an explanation to our son since I heard about his observation and conclusion regarding my bad driving habits. However, I all of a sudden have a late New Year resolution declared that I should start changing how I drive—at the very least, when he is around—so I could convince him that driving could be a pleasant experience. If he could actually drive soon is another matter.

“Daddy, I won’t be able to drive,” I heard him when I allowed him one day to sit on his own in the driver seat while parked. “I still have short legs, can’t reach the pedals yet,” he added. I smiled and said, “Not now, but soon.” I was suppressing sadness, I was telling him a lie.

Driving will be the least of his worries when Marcus gets older. His dystrophy is taking its toll on his mobility and what was once a simple task of standing and staying still is presently becoming more of a challenge. I can see his frustrations often. Last night, I heard his sentiment myself.

“I am angry at God.” A statement he once told his mother, he said it again immediately after we had our regular night prayer. Like a shot of espresso, such short yet strong statement got me back on my senses away from a progressing sleepy state. Time seems to go slow as my mind processes what it heard while at the same tries to recall every plausible explanation it could get from what I learned in Catholic school and from the homilies in the masses I have attended. How on earth am I going to explain and defend God to this child who regularly prays before he goes to bed?

Well, my wife and I had something. That God has plans for everyone and everything happens for a reason. That to feel angry at his present condition is perfectly normal but he must understand and keep his faith that God does look after him.  It sounds cliché but it was the most rational we can muster at that very moment. We hope that as Marcus grows up and continues to have more questions in life we also strengthen our faith so that  we will have better and convincing answers. Answers that are real, answers that we know aren’t lies.

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No pictures for now, will not waste time waiting for Photobucket to load. We’re getting a passport of Marcus.

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Mood: 2/10 Honks! (Heading to DFA Alabang)

Our First DMD Awareness Day

As America observes Labor Day some people all over the world celebrate Duchenne Muscular Dystrophy (DMD) Awareness Day and I, my wife, and Marcus were among those who participated in our own simple way. Kudos to wifey, she had a perfect plan on how we should go about it which is by celebrating the day together with people whom Marcus stay with five days a week.  So today, we surprised his classmates during their lunch break.

Wifey and I went to the school with our car and bag packed. We stopped by to meet up with the one who baked the cupcakes, dropped by Greenwich for the pizza, and  we filled our backseat with red and white helium balloons from a small party needs store. In the trunk were our presentation materials—a YouTube video saved on a laptop and a wheelchair.

Questions were all over when we entered the classroom as everyone seems to wonder when they saw me pushing the wheelchair in—the sight of it entering the school gate made waiting parents’, yayas’, and guardians’ heads turn as well. But with most of his classmates already familiar with how Marcus behaves, I soon heard ahhs and ohs as a sign of their realization of  whom the attractive red and blue wheelchair belongs to. Curiosity heightened when I made a short introduction of why we are there. Then I played BrainPOP’s animation about Duchenne Muscular Dystrophy. Everyone was all ears.

The attentive audience.

Reactions differ as the 4-minute video played. Some smiled—after recognizing the similarities of the animated character’s traits with that of Marcus—and some tried to absorb what they have just seen. Marcus’ adviser and the school’s principal were also present and even if they are the only two adults who now begin to understand more about Marcus’ condition made our efforts to spread the word about DMD all worth it.

We capped the celebration by letting the grade one class release the red and white balloons. Everyone enjoyed the celebration so we declare our first DMD awareness day as one mission accomplished.

Saying goodbye to the red and white balloons.

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My wife and I also took the opportunity to give everyone a heads up that sooner or later Marcus will be leaving their school and most of them cannot believe it. Other kids who are also fond of Marcus were surprised about the news. Sigh.

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Mood: 3/10 Honks! (Marcus’ 2nd time to shower in the rain.)

We got new wheels

The information is overwhelming and the more we learn about muscle dystrophy the more we begin to embrace the challenges that need to be dealt with. Besides the anxiety that we feel every single day when we send Marcus to school, thinking what if he falls in the class, in the playground, what if he gets pushed around and so on, we also have to start recognizing the behaviors that are associated with people with DMD.

Tell-tale signs that we once dismissed as just part of a growing up kid’s life are now becoming to make sense. These signs we realized just now are psychosocial issues commonly exhibited by people with Duchenne Muscular Dystrophy or DMD.  According to www.parentprojectmd.org, there are things to watch out for:

  • He has delays in language development or problems with communication.
  • He has difficulty interacting with others and/or making friends.
  • He is often angry, argues a lot, or is very inflexible about what he wants to happen.
  • He is forgetful or absent-minded, or has difficulty paying attention.
  • He is very quiet and withdrawn, and prefers to be by himself.
  • He is very fearful or anxious.
  • He often has a negative/pessimistic attitude or says bad things about himself.
  • He has difficulty learning new academic skills or earns poor grades.
  • He has rituals or routines that have to be followed in a particular way.
  • He has difficulty sitting still, is impulsive, or very impatient.

(See article here.)

All these are behaviors that we have observed from Marcus even before we learned he has DMD (likely). There are two traits, however, that are just starting to come out: difficulty starting to learn new academic skills and saying bad things about himself.

His first wheelchair. Picture taken inside a Healthy Options store where we bought CoQ 10.

While there were some challenges in school, so typical of a preschooler, grades weren’t among our problems. In fact, Marcus finished his three years in preschool being on top of his class, albeit a small one. The possible reason he is now beginning to fall back is because we have stopped putting some pressure on him to excel in school. We learned that writing alone could stress out the muscles of those with DMD which perfectly explains why Marcus complains getting tired after writing for a couple of minutes.

Our trip to the doctor just this last Thursday also confirmed that Marcus would soon find writing using a pen or pencil a hard task to accomplish. She cites one patient that have to eventually ask to be permitted to write on a tablet instead on paper while in school. She said that dropping out of school due to difficulty in catching up with the other kids is a possible scenario.

On this same visit we finally had all the recent tests interpreted. The one that struck us the most is the CPK result. Marcus’ blood test was off the chart. According to the doctor, there is so much dystrophin wasted by Marcus’ system as seen from his CK reading—his was around 15,000 when a normal range should be around 150 units per liter. It was that bad. For now, the doctor prescribed a couple of supplements that should help somehow balance our kid’s system. He is to start taking Coenzyme Q10 for his heart and Diamaxin for his muscles. In 3-6 months, we will see if these drugs will improve something.

He can still dance but just briefly. (Photo taken inside SM South Mall after a trip to the nearby UPHMC.)

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 Mood: 5/10 Honks! (Off to Batangas, first time to check the lot up close.)

The Oldest Story We Can All Relate To

Inspiring stories about parenting, its challenges, and how people are able to deal with it are all over but there is one particular story that has become my favorite.

There once lived a couple who never had a child. They were already old and the idea of having one seems more impossible as years go by. The day, however, came when someone paid a visit and who then told the husband that they will soon have a son.

His wife who overheard the conversation couldn’t believe her ears. The news to her was unreal. She believed that she cannot bear a child anymore but her husband who is a man of big faith knew otherwise.

And a miracle did happen. The once childless couple soon became a parent of a son. He was a gift and they love him so much.

Years passed and something would put them to the test. The man was told that their most cherished son needs to be offered and he received instructions how it would be done.

The fateful day arrived. Overcoming sadness as well as reluctance the man proceeded as planned. Taking his son with him he climbed the mountain where everything would take place. All set, the altar ready and his son tied up, the man raised his knife to execute the ultimate sacrifice.

Just as he was about to take his own son’s life, a voice from heaven soon thundered as an Angel ordered, “You have proven yourself. Let go of your son and from the bushes you will find a lamb. Use it instead as your offering to God.” This is the story of the couple Abraham and Sarah and their son, their only son, Isaac.

I never knew that a story from the biblical period, one that I have read to our son several times before, will soon be the same as our condition sans the altar and the need to slay a son–even a poor lamb. The similarity is in how an unexpected situation would test our faith.

It was how it felt like when my wife and I first learned about Marcus having a progressive crippling condition. We questioned God, we asked so many questions. We asked why us. We asked why of all children, why Marcus. We hoped that we would soon find the answers.

For now we cannot do anything but accept the fact that this predicament we are in is a test–a rather difficult one–that we need to pass. It is our own cross that we need to carry and a monster that we should face boldly. We must remain steadfast with the heartbreaking fact that we will eventually lose our only son because of Duchenne Muscle Dystrophy. I know that this is also the same feeling that others have whose lives of their loved ones are threatened by conditions like cancer and Alzheimer’s disease.

Such unfortunate circumstance made the recently concluded Father’s Day more meaningful to me. While until now I continue to strive to be that ideal father, I know that I have found my purpose in life: to be a good father that Marcus needs to have whether or not that angel from heaven comes down and tells us, “You’ve passed, you will have your beloved son back.”

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Mood: 6/10 Honks! (He told his mother that he finds it hard to wake up from bed.)

Back to School 2015

Today Marcus goes back to school. Back to where he used to be instead of the one in Batangas. This time it was us who are more anxious about him going back to school after learning about his condition this year.

The thought of him mingling with active school kids gives me and my wife that uneasy feeling. We fear that he might fall while playing or even just going in front of the class. We fear that he might get depressed if he sees other kids running around without effort while he just sit and watch them. We thought that he will have new sets of classmates as we heard that none from his previous class enrolled.

Well I was wrong. I accompanied him to school this morning and I have never been more happy to see old faces and to see them excited to see Marcus. So excited that they all transferred seats to be with him.

It is also nice to discover that the school was able to complete the construction of the new rooms. Marcus now goes to an entirely different room as a grade one pupil. So far this organization have been doing a great job. I think I could now say that this is a good start to a new school year.

New classroom, old happy faces.

 

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Mood: 2/10 Honks! (Can’t wait to see how this day will end.)

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.)

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.)