Life And Death And Marcus

At some point of their growing up years kids will have so much range of ideas running inside their heads. During this time their questions would reveal their developing perspective of life…and even death.

Like two weeks ago I had weird and unexpected questions from Marcus. Passing by this one establishment along our usual route to school he asked, “Daddy, what are those boxes for?” He was pointing at the funeral parlor’s caskets on display. “That’s where the dead bodies are placed,” I said plainly with the hope to dismiss the topic once and for all.

But obviously he is not done yet as another day came and this time his queries were more deduced. “Daddy, when am I going to die…will everyone die?” Trying to be subtle I answered, “Yes, when people get old, we will eventually die.” Then he followed up, “So why is lolo ‘hel still alive?”

For some strange and creepy coincidence my 80-year old father had a close call about a week after that discussion when he slipped and fell hard one rainy afternoon. Thankfully his tubes have been removed just recently and at this moment is recovering in a hospital.

Then the other night wifey told me a story. She said that while preparing to go to sleep, out of nowhere, Marcus told her, “Mommy, when I’m old and gone, please name your new baby Marcus. That way, he will still be me. I would still sleep beside you, I would still be able to check my toys.” It was something that gave me mixed emotions. For one, I find it funny as it shows his innocence, his current lack of grasp of life’s timeline. The freaky part is that it made me recall Robert De Niro’s Godsend. The sad thing is that it could be imminent and when that happens there will be no new Marcus. Probably just me and wifey and his toys.

I wouldn’t wonder though if Marcus still does not fully understand life and death because even adults do not. Life is so complex that we won’t know all about it until we have lived it to the fullest. Death will remain a mystery until have experienced or got closed to it. That’s life, that’s death.

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He now has a PWD card. The bright side, he gets to watch free movies every week among other benefits.

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Mood: 2/10 Honks! (God has been testing us and so far has not failed us.)

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The Wheelchair Didn’t Stop Them

On my way home this morning I saw a mother pushing her kid on a wheelchair along the side of the road and it’s one of those instances where for a couple of seconds–while behind the wheel–I would ponder how life it’s going to be for Marcus.

Man and kid on a wheelchair.  The side mirror is the same as mine but  this is a photo from Top Gear Philippines’ FB page.

Since the day we found out about his condition the sight of wheelchairs has made me feel sentimental. Anywhere I see it, I would remember Marcus. Gladly, there are days when it’s not always that bad and sad–like today, a news inspired me.

DMD did not stop this guy from achieving his goal. (Photo from abs-cbnnews.com)

The article from abs-cbnnews.com features a guy named Carl Adrian P. Castueras who recently graduated cum laude in UP Los Banos. He was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was eight years old. Shown behind him is his proud mom who according to this same article had to stop working as a marketing executive from the time she learned about her son’s condition to spend more time with him. Well, obviously her efforts and Adrian’s dedication did pay off. Good job to you brave mother and more power to you Adrian. (I read this news while waiting for wifey to finish helping Marcus prepare for school.)

Another story that had me realize that there is still indeed life after DMD–that is after learning about it–is a video I saw on YouTube.com just a couple of weeks ago.

Aaron 'Wheelz' Fotheringham
Yes, that is a wheelchair flying. (Photo from YouTube.com)

Aaron ‘Wheelz’ Fotheringham is a guy who despite his spinal injury–not due to DMD though–was able to successfully pull off a a back flip on his wheelchair. Here’s the video here.

I now begin to see a brighter perspective and hope that life ahead won’t be that miserable after all just by looking at these inspiring news of people being able to overcome their own disability. While I do not expect anymore for Marcus to graduate as the top of his class or become another person who can back flip his wheelchair, I do expect that he will be able to live his life to the fullest by accepting his limitations and making use of whatever capacity his mind and body will allow him to do.

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Mood: 4/10 Honks! (We tried Call of Duty: Black Ops but it’s really not for him yet. Game’s too graphic.)

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.)

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.)

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.

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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…

 

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Lyrics from azlyrics.com

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