The Mayans were wrong and we’re all still here. We’re closing out 2012 with a big cheer! I’d like to take this chance to write some thoughts and give thanks to a year that has gone.

First thing’s first. Thank God for another year in this world. It’s been a tough year health wise. With ERT not being regular there was a decline that I felt. Still I’m glad it’s still going and I will try to make it up in 2013. I am still grateful for the treatments I’m getting. It helped me reach this far.

2012 was generally good. Scratch that. It was fantastic. The biggest blessing thus far is the addition of my first nephew Lucas. That alone made 2012 the best year ever. I look forward to seeing him grow up in the years to come.

Work has been good. I’m thankful and blessed to have gainful employment when some people do not. It allows me to do the things I need to do outside of work. I’m looking forward to another good year at work and hopefully grow further and improve along the way. I thank my co-workers and employers for allowing me to be a part of the organization.

I turned 35 this year, a significant milestone to say the least. I honestly thought I was going to celebrate the milestone with a big bang. As the date drew near, I realized that I already had what I really wanted, a happy family, friends that I can count on and the fact that I’m still here. I did not need a big celebration to remind me how lucky I am. I spent time with some of the people that really mattered to me. Those people that mattered but I didn’t see I take comfort in knowing that they still wish me well.

Oh, did I mention that I finally got a big boy bed? Yeah after all these years of sleeping in a bed that I’ve slept in since I was in high school, I finally bought myself a bed befitting my age. I guess that’s quite something.

One of the things I’m also most thankful for this year is the gift of friendship. Making new ones, strengthening old ones and reconnecting with people I have not seen or spoken to in years. Some friendships do stand the test of time. Even if you haven’t seen each other in years, you just pick up where you left off. Then there are also new friends whom you’ve just met but feels like you’ve known them for years already. They come in all shapes and sizes too!

It’s also been a good year for the Philippine Society for Orphan Disorders. We’ve helped several patients, moved to a new office, raise some money and awareness. It’s been one of the best years so far and we only want to go further. Children with rare diseases need help and we will keep on fighting for them.

I’m glad the world did not end. Looking back, despite all the challenges, I think I’m at the best place in my life that I’ve ever been. I can’t be thankful enough to God for the blessings. I know much needs to be done and I still want to fulfill other dreams. If the world did end, I know that I’d still be thankful. I’ve done a lot of things and met a lot of great people along the way. I don’t want it to end though because I know the best is yet to come.

As 2013 approaches, I wish for good health, better opportunities financially so I can pursue the other dreams I’ve longed for. That includes making my mark in this world.

From my family to yours, I wish you all a happy and prosperous new year. I thank you for being a part of 2012. May God guide you and keep you in the years to come.

I was sitting with my dad when I found out that his plane had crashed. My dad was catching up with the news on his iPad. He let out a quiet “Oh no” and proceeded to tell us that the plane carrying the DILG Secretary had crashed 500 meters short of the Masbate airport.

I first heard of Sec. Jesse years ago. My dad was helping campaign for former Sen. Raul Roco during his bid for the Presidency. My dad told me about the Mayor of Naga who has done so much for the city. Naga is close to my dad’s heart because it is the city where he grew up. I’ve never been to Naga myself but I’ve often heard my dad and his siblings tell stories about their childhood.

From my dad’s stories I’ve always known and had the impression that Sec. Jesse was a good man. Decent, honest and sincerely loved to serve the public. He was a public servant and not a politician.

So when I heard the news of his crash I had hoped that somehow he survived it. In fact my heart leapt a little when I read a tweet saying that some fishermen found him and brought him back to safety. It later turned out to be false.

I was glued to social media. Twitter and Facebook were my companions for the next few hours. Hoping and praying that somehow a miracle would happen. I was amazed by how many tweets and status updates I’ve seen praying and hoping for his safe return.

On Facebook I even posted my observation – “It’s a true testament to what kind of a person Sec. Robredo is. The whole Philippines is praying for his safe return. Amazing! Can we say the same for other gov’t officials?”

I’ve never seen that much people want a government official back safely. People from all over the Philippines, not just from Naga wanted, willing him to come back safely. That shows you how great and good a man he is. When you’re a public servant/politician and people want you back alive that says a lot.

I started reading more about him. I read past articles and watched videos about Sec. Jesse. I wanted to know more about the man whom some say was the President the Philippines should have had. He was the modern day equivalent of a Ramon Magsaysay, a man who is close to the masses and in touch with reality.

I read about how he became the youngest Mayor of Naga at 29. How he served three terms but graciously stepped down when his term limit was reached. He did not ask his wife or any relative to run in his place. He would later on go back to becoming Mayor after a 3-year break. He studied at Harvard during that time. He took Naga from a 3^rd class city to a 1^st class city. He eliminated corruption, opened up the local government and instituted reforms. He swept the streets and walked it in sandals sans bodyguards. Any Nagueño could come up to him and talk to him about their problems or just to say hello. He was a true public servant.

Sec. Jesse was bestowed in 2000 the Ramon Magsaysay Award for Government Service, the first for a Mayor in the Philippines.

As I got to read the stories, watched the videos, see the tweets and Facebook posts of people, it really dawned on me that the Philippines lost a great man.

After 24 hours of being lost at sea, my heart sank. Chances are he was dead. They crashed so close to the shore. They should have found him by now. Still with all the people praying for him, a miracle might happen.

On the morning of the 21^st I awoke to the sad news that his body had been found. It became real. We had really lost one of the best modern day public servants of our country.

I pondered why God could take such a good man from us so soon. I could name a lot of people I’d rather have on that plane. It’s not very Christian of me but I am only saying what I really felt. We needed him to serve our country. We had so very few people like him around. The loss of one was a big blow.

As I was thinking about that, another wise and great man came into mind. I had read a quote from Tony Meloto, founder of Gawad Kalinga a day or so before. I’m not sure if he wrote it for Sec. Jesse or it was something from way before. It went “When heroes fall from the sky, many more will learn to fly”.

It is difficult to understand why God takes away good men so soon. When I read the words of Tony Meloto, I understood that sometimes God needs to take away our crutches so we can stand on our own.

In Sec. Jesse’s death God might be telling us that it is time for us to be heroes in our capacity. That in order for Sec. Jesse’s memory to live on and his life to mean more that what it already does, we should follow his example and take up his cause.

Let his life be an example for all of us. That a boy from Naga, who came from humble beginnings can affect such a profound change in his community and eventually the entire country. I know that we all can’t be Mayors and public servants like him but we can all strive to be a little like him.

Sec. Jesse showed us that we can be walk the straight path and be successful. That no matter how busy life gets family always matters. That being a public servant truly means serving others. That in wielding power one must use it for good and not flaunt it.

I used to only ask this question when faced with tough decisions, “What Would Jesus Do?” Now I also need to ask myself “What Would Jesse Do?”

As a I mourn for someone whom I’ve never met and yet feel a great attachment to, I have to ask how can I best keep his memory alive. The only answer I can think of is to try to live my life as he did. I know I won’t be a Mayor, I don’t even think I can be a public servant but in whatever I do or wherever life takes me I can always try to live with honesty, integrity and decency like Sec. Jesse did. I can serve my country in my own way by working hard, being productive, picking up after myself. Trying to avoid perpetuating what is wrong in our society today. Follow rules. Treat everyone with respect. I know in doing those things I can honor the memory of Sec. Jesse.

I’ve always wanted to visit Naga. It is after all the place where my father grew up. That will be always be the first reason why I would like to go. Now I’ve added another reason. I want to see the city that gave birth to such a great man. I want to see what Naga is now because of him. Hopefully one day I will make that trip.

To Sec. Jesse’s family, thank you for sharing him with the entire nation. I can’t begin to understand what you’re feeling now, I can only send my sympathies, condolences and prayers. For what it’s worth please know that I have a deep admiration for him and I think the whole country does too. He will be missed.

To the others like me who admire the late secretary, let us honor him not only during this time of loss but also during the years ahead. In our own small way follow his example. We can always try to ask ourselves “What Would Jesse Do?” If we all can be a little like him I’m sure the Philippines will be in a much better shape.

Sec. Jesse, may you rest in peace. The whole nation mourns for you. You are deeply loved not only by your family but the Filipino people. Look upon us and guide our country towards greatness. Godspeed. Dios Mabalos.

We will only truly lose Sec. Robredo if we do not take up his cause and follow his example. A true servant leader, he embodies what a great Filipino public servant should be.

Paraphrasing from Tony Meloto “When a hero falls from the sky, many others will learn to fly” A true Filipino hero fell from the sky. Let it be our duty to learn to fly and soar to the heights that Sec. Robredo dared to glide.

God speed Sec. Jesse. You will be missed not only by your family but by the entire Filipino nation. Take heart that a whole nation is in tears because of your early demise. It means you are loved and cherished. In the world of politics very few people have the same respect we have for you. Look after the nation from heaven. We will see you again some day. Dios Mabalos!

I initially just wanted to post it on my blog. After receiving favorable feedback from friends and family I realized that I wanted to share it with more people.

I’ve been a fan of the people behind Rappler for some time. Notably Maria Ressa and Patricia Evangelista.

Maria I was fortunate enough to meet once during a visit to ABS-CBN while she was still working there. I had guested on Niña Corpuz’s segment on Mornings@ANC. After the show Niña was gracious enough to give me a tour of the newsroom and even introduced me to several of her bosses. One of which was Maria.

Patricia I had met years ago during an event. We were speakers during that event. She had spoken before me and I was just amazed by how well this 16-year-old girl was addressing the audience. She spoke with such confidence and eloquence that almost made me not want to speak after her.

Patricia and I became friends afterwards. She also did what I still consider one of the best articles about me ever written. I still have it framed here at home.

Going back. One of my friends also happened to work at Rappler. Josh Villanueva whom I met through the local Mac Users Group is one of the senior people at Rappler. I saw Josh online on Facebook and messaged him. I asked him if Rappler was accepting contributions. I told him that I had written something and I would like to submit it for publication on their site.

Josh said that Rapper accepts contributions and he went on to give me the email address where contributions are sent. So I sent it in.

I received a message from Josh later in the evening. He said Maria had read it and liked it. They were going to publish it. He asked me to write a short paragraph about Pompe disease as well as a couple of sentences about me. I submitted that shortly after.

9:52 pm July 16^th, my article appeared on the Move.ph section of Rappler. Amazing!

Maria Ressa went on Twitter to mention the article. I think that was the highlight of this entire experience.

I am deeply humbled and extremely happy that the article was published. I am equally happy about the reception it got. Random strangers sent me messages on Twitter saying they liked it and were inspired by what I wrote. It warms my heart that people took something from the lessons I learned and hopefully it will help them in some way.

My greatest fear is leaving this world having not made a difference in this world and not sharing what I’ve learned with others. This article is one small step towards alleviating that fear.

Special thanks goes out to the whole Rappler team, especially to Josh Villanueva for being an instrument in making this happen.

A friend of mine is set to open up another restaurant by mid August. Umami Hambaagu House promises to server the best “melt in your mouth” Japanese Burger Steaks in town. If their previous restaurants are any indication this promises to be something worth trying.

For now the location is hush-hush. If you want to find out where it is, head on to their web site and sign up for their news letter. They will inform you of the location once it’s ready for the public.

Quoting from their web site:

Umami is a small, personal and cozy restaurant serving creative and authentic Japanese burger steaks in a secret location somewhere within Metro Manila. The only way to know our location is by joining our mailing list or following us on Facebook. If you desperately want to know, you can ask us but we’ll have to murder you in cold blood right after.

I for one can’t wait to try it out!

I’m not here to talk about Pompe Disease specifically. If you want to know more about it you can head on here to read about it. Please finish this first though.

In my 35 years of living, 25 of which were spent battling a dreaded disease I learned a lot of things. Lessons that I know have made me a much better person. Lessons that I know will help other people as well. That is the main purpose why I wrote this article.

Dealing with disability or in my case multiple disabilities opens you up to a different perspective about life. I believe that this has helped shape me as a better person. I’d like to share these lessons and insights with you. By no means are these ranked by importance.

1. Family matters

One of the things I’m most thankful for in life is that I’ve been blessed with such a good family. I’m not talking about just my immediate family (mom, dad and brother) but I’m always blessed with a terrific extended family.I am where I am today largely in part because of the love and support I got from my family. Early on when I found out I was sick most of the weight of my sickness fell on my parents shoulders. They were the ones who fully understood what was wrong and what was going to happen. I was quite oblivious to the fact that my sickness was terrible and the prognosis was not that good.My parents told me what I needed to know but held back on some things that would not help. They did this until I was at the right age to fully comprehend and could deal with my sickness.They also gave me every opportunity to succeed and do better in life even if people told them it was a long shot.

I remember one doctor who we consulted telling my mom that they should just put me in a special needs home because it would be difficult to raise me. My parents would not hear of it. They raised me themselves and made sure I had the best childhood and life possible.

My brother also paid a huge part in shaping how I’d turn out. In more ways than one he seemed to be the “older” brother.

When I first started to use a wheelchair, my brother was one of the persons who made it feel more comfortable. When we were at a mall, he’d push me around and often times making a game or race out of it.

My brother was very patient and understanding not just towards me but also during the times that my parents had to give their attention to me. He never complained or made it hard for my parents.

Apart from my parents and sibling, my extended family also played a big part. Most of my uncles and aunts were truly supportive. Pitching in to help my parents out when they could, providing moral support and other things.

For almost 10 years when I was growing up my dad had to travel a lot. He was away most of the time on business. One of my uncle’s lived beside our house. He would take us out on weekends for ice cream or burgers when my dad was away. He became a second dad to my brother and I.

One of the best things my uncle did for me was teach me how to drive! I was about 12 then and a complete car nut. He would take me out to a secluded set of roads near where we lived and taught me how to drive. He didn’t mind that his car was new. That was a dream come true! Now I look back at it and smile that I at least got to drive before my disease took over and I couldn’t walk anymore.

2. You gotta have faith

Faith is important. Whether it’s faith in God, in your family or yourself, faith is one thing that people need to develop. Believing in something or in people is essential.I personally believe in God. I believe that there’s a supreme being where we all came from. I believe that he’s looked out for me over the years. Not all people believe in the same thing but I do.I believe in people. I have faith in my family and friends that in time of need they will be there.I believe that the world is essentially good. I know this because of the countless family, friends and even strangers who helped me along the way. I believe in the goodness of people.

3. Education is important

I think the one of the best things my parents have ever done for me was to ensure that I finished school. A lot of people seemed to be surprised that I actually have a college degree. Given the extent of my disabilities most think that I didn’t even bother to finish school anymore. For a time there I thought I wouldn’t.I remember when I was in my teens and just recently found out about the possible outcome of my disease, I thought to myself that I should just stop school. I’m probably not going to live past the age of 30, so why bother getting an education. I can spend that time enjoying myself and doing other things I actually liked to do.I told my dad what I thought. He said, “Well, what if you do live past thirty, what then?” He explained further that we never know what’s going to happen in life. You can’t predict the future.True enough, I’m 35 and I see myself still being around for quite a few more years. I’ve benefited a lot from my education. I am employed and contribute to society because of it. I am able to participate in the world around me because I know things.

My dad told me that because of my disability I would never be able to rely on my physical abilities to land a job or support myself. However, I can rely on my mental abilities to get ahead and become a productive member of society. I am thankful that I listened to him. I am able to look at myself in the mirror and have a sense of dignity because I know I am worth something.

4. Best way to get help is to help yourself

I’ve gotten a lot of help along the way while dealing with Pompe disease. Most of the time I didn’t even have to ask for it. Help was just extended.I’ve often asked myself why people were so eager to help me out and some people found it to hard to get help from others. I realized one key difference. People who helped me out saw that I was trying my best to do what I can to improve my situation. This in turn “inspired” them to help me out.They saw that the help they extend to me would not be wasted. They saw the effort I was putting into my life and that made the difference.Some people ask or worse demand help from others but they’re not doing anything to address their problems. That doesn’t encourage people to help because they get the feeling that they’re the ones trying to solve the problem instead of the person they’re helping. This might work once or twice but it gets tiresome. Especially if they see that the person they’re helping is not really putting in much effort except when it comes to asking for help.

So if you want people to help you out, show them that you’re worth helping.

5. Dream other dreams

When I was a kid I dreamt of becoming a race car driver. I think God heard me wrong when I prayed to him. He turned me into part-man, part-car instead!Seriously, I had several dreams when I was growing up. You hear people say that if you set your mind to it, dreams come true. Work hard at it and you can achieve it. Sadly that’s not true. No matter how much effort you put into it, some dreams just can’t come true. Countless kids dreamt of being Michael Jordan sadly there can only be a handful who can be like Mike.That doesn’t mean that it’s over though and that our lives need to be miserable because we didn’t achieve our dreams. One of the things I learned is to dream other dreams. There are countless other dreams to be had and some of those are achievable. Each person can realize another dream that can come true. If a dream doesn’t come true, choose another one and go for that.

6. The world is not flat

I mean this both figuratively and literally. When you spend most of your time on a wheelchair you will feel all the bumps in the road that most people get to skip. You feel every elevation change and every uneven surface.Life is not easy. It’s not always going to be a bed of roses. There’s going to be a lot of ups and downs, highs and lows. We need to accept it as such and learn to deal with the uneven surface.Pompe disease emphasized a lot of problems and obstacles most people take for granted. Simple things as doing daily living activities like taking a bath, brushing your teeth, eating, etc. Those are constant challenges or bumps in the road that a person in my situation deals with on a daily basis. We learned that the everyday world is not as easy as it looks. Those are obstacles that we just need to learn to work around with.

7. The world won’t stop for you

Contrary to what most people think the world does not revolve around us. It doesn’t follow our timeline nor does it care if you have challenges or not. It just keeps going.Life is finite. It will end at one point. Time keeps going. We can’t hit pause, we can’t rewind or fast forward. Life just keeps playing. So it’s important to keep playing along with it.I know that I have problems, some of which are extremely hard to deal with but I can’t just sit down, hit pause and take a break. Life will keep going. I need to keep pushing forward or I’ll get left behind.So I learned not to dwell on things. I try to keep going and keep pushing through. Trying to find ways to solve my problems so I can keep pace with life around me. I can’t tell the world to stop just because I’m having a bad day.

8. True strength

Whenever I think about strength, I think about my mom and dad. My mom especially. My parents have been amazing throughout our journey with Pompe Disease. They were both in their 30s or right about the age I am now when they found out that their eldest son had a dreaded disease.They were just really getting into the groove of life. Promising careers, establishing a good life not just for them but for their children too. This devastating news caught them off guard.Some parents would have faltered. I’ve seen marriages broken up because one parent couldn’t handle a sick child. It takes immense strength and courage to face a problem head on and not give up on it.My parents fought through financial, emotional, physical, psychological challenges in the 20 something years of knowing their son had Pompe Disease. From medical bills, sleepless nights of worrying if their son will make it to adulthood, the pain of seeing their son being picked on in school or the frustration of seeing their son not being able to do the things that other children could do, both my parents faced those challenges head on.

Their love and support for me never faltered. I never got a sense that they wanted to give up. I think that taught me what true strength meant.

9. Believe in yourself and others will believe in you

If there’s only person who believes in you it should be you. It all starts from that. When you can’t even believe in yourself it’s hard to convince others to believe in you.One of the biggest challenges I have is getting people to see past the physical disabilities. To most people who don’t know me I’m just a man in a wheelchair who probably can’t do much. That’s until they get to know me and see that I’m much more than that.The first real job I had was working for a small company that my dad, a cousin and I put up. I had a job by default because we started it ourselves. About a year or so into it I started to wonder if I could get someone other than a relative to hire me.So I told my dad that I wanted to try and see if I could do it. Of course he said yes. So I sent out my resume and went to several interviews. I got rejected of course. Some people didn’t even give me a chance.

I eventually got a job though. Someone took a chance on me and hired me. He even accommodated my situation and allowed me to work from home most of the time. Up to this day I am grateful to that person. I don’t think he would have hired me if I didn’t believe I could do it. I had to convince him I could and before I could do that I had to believe in myself.

So the first person you need to convince that you’re worth something is yourself. The rest will follow.

10. It’s ThisAbility not Disability

I’ve always been brought up to be a positive person. I learned to look at the bright side of life. Some people see the glass half empty. I see it half full. It’s cliché I know but it’s the truth.One day I was at the place where I do a lot of my thinking, the toilet,  I said to myself, I want to help convey the message of positivity to people. How do I do that? I wanted to find a way that is apt for my situation. It hit me! From now on when people ask I won’t tell them I have a disability, instead I will tell them I have ThisAbility!I know I can’t do a lot of things. There’s nothing I can do to change that. It’s done. No matter how much crying and pleading I do it won’t change it. I do however still have certain abilities. I needed to focus on that and highlight those instead of the things I can’t do. I need to turn a negative into a positive.Disability is such a negative term. The prefix “dis” means a negation of something. In this case it’s a negation of abilities. I didn’t want that to define who I am. I want to focus on the good. So I started with the word itself. I turned disability into ThisAbility. A word I made up that means focusing on your abilities.

There’s still a lot of things I can do in this world. I needed to focus on that and show the world that despite my challenges I can still do things and be productive.

Two people can look at the same thing and see it differently. Some people look at the glass half full and some half empty. I learned that how you look at things or your attitude towards it influences the outcome a lot.

My parents always taught me to look at the positive side of things. In any given situation there’s going to be good and bad. So rather than focusing on the negatives I learned to focus on the positive. That’s helped me a lot over the years.

These are just some lessons that I’ve learned over the years of dealing with Pompe Disease. The disability brought about it gave me a unique perspective in life. I don’t claim that these things are new or that they’re earth shattering. I just learned that most people take these lessons for granted and that sometimes looking at life from another perspective helps to amplify the importance of these everyday life lessons.

Thank you for allowing me to share these with you. Hopefully it has helped you in someway. I’d appreciate any insights or questions you might have about what I wrote. Just leave me a message on the comments section below.

I’ve been a big fan of Terence Wrong’s medical documentaries ever since I saw the first episode of Boston Med that aired 2010. After seeing that show I googled for more information and saw that there were prior documentaries. So I ended up watching Hopkins 24/7 and Hopkins.

I was so glad to find out that a new documentary was set to air last July 10.

I caught the first episode just today and I must say, it looks to be another good series. I love that it’s set in New York. That city will always have a special place in my heart. I’ve been there several times and I spent some of my happiest days creating good memories there.

Some highlights of the show:

• Dr. Mehmet Oz makes an appearance. For those who don’t know him, he’s the doctor that used to guest a lot on Oprah. No, not Dr. Phil. The real doctor. I love Dr. Oz. He always has a way of explaining things and always seems so sincere.
• Dangers of taking Cialis. A patient was admitted to the ER due to an erection lasting for more than 12 hours as a result of taking Cialis. I would not want to be in his shoes. Ever!
• Brain surgery is such an amazing thing. How doctors are able to do it is beyond me. The amount of advances in the medical field we have now is astonishing. I can’t wait to see what we can do in 20 years.
• The hot ER nurse named Marina. She looks like Kate Hudson. I was not surprised when a patient asked her out.

I also got to experience what it was like to be in a New York hospital although the hospital I went to was not the same ones featured in the show. It did invoke memories nonetheless.

Through my experience with Pompe Disease and the countless encounters with doctors and hospitals I’ve developed a love for the medical profession. I honestly think it’s one of the noble professions in the world. I’m sad that business interests are destroying some parts of it but for the most part it is something special.

Knowing what I know now and if I was given another life to live I would seriously want to be a doctor or some other medically related profession. It’s a profession wherein everyday you get a chance to make a difference in a person’s life. It’s a meaningful job, something that can’t be quantified.

So if you’re looking for something to watch, give NY Med a try. It’s a nice glimpse into a world filled with heroes, medical marvels, compassion, strength of the human spirit and stories of patients who’s lives were forever changed because of selfless people who chose saving lives as their everyday duty.

*NY Med is an 8 part documentary airing Tuesdays at 10pm on ABC

Well don’t take this literally. I’m using “Eat Steak Everyday” as an analogy to a common but important lesson that I was reminded of last week.

My family and I had gone out to Elbert’s Steakroom one of the best steak places in Manila. I’ve wanted to take my parents out to a nice dinner. My dad’s birthday was coming up, I had extra money saved up and it also happens I was given the night off from work. With everything falling into place we went out for a special dinner.

To make the long story short we had one of the best steaks I’ve tried. It was a great dinner with dad, mom and my brother. My sister-in-law couldn’t make it because she was on bed rest. That would have made it better.

This brings me to the important lesson I was reminded of. I was fast asleep, dreaming of nice things. It was around 5:15 in the morning. I had been asleep for about 2 hours (I sleep late). I was suddenly awakened. I was gasping for air and couldn’t breathe. I realized that the reason for this was because the hose that connected my mask to my breathing machine came loose. Uh-oh!

I sleep alone in my room. I have a buzzer to call an aide whenever I need help. I also sleep with my phone beside me. When this happened I was lying on my side. I desperately squeeze the buzzer. It wasn’t working. For some reason I couldn’t hear the audible chime that the receiver should make.

My heart was starting to race. I was trying to concentrate on my breathing while trying to work the buzzer. I can barely breathe without my machine but now it was more difficult since I was lying down and had my mask on.

I tried to keep calm. In those less than two minutes my mind was racing through my options. I started to shout out the name of my aide. At the same time I gave up on my buzzer and was now fumbling to dial my phone. It was in an awkward position and I couldn’t swipe it to open. I realized it was upside down. Before I could turn my phone around my aide came into the room. I gestured to him that the hose was loose. He promptly connected it back.

My dad was also standing at the doorway of my room. Both my dad and mom heard my shouts and one of them woke my aide from sleep. Whew! Crisis averted. They asked if I was ok. I nodded yes and went back to sleep.

The last thought I had before sleeping though was “if I died that night at least my last meal was one of the best steaks I’ve had”.

I know it sounds funny but it reminded me of something that we all know but sometimes forget. We should live each day as though it is our last. We should take each opportunity to do the things we want and make us happy.

This is not to say that we should throw all caution in the wind and live recklessly. It just means that we should do something each day that makes us happy. Something that will make us say that this day was not wasted. If today happened to be our last day we would have no or few regrets.

We’ll never know when our time is up until it actually happens. People who are completely healthy with their whole lives ahead of them can be hit by a bus while crossing the street or something as random as that. Life is just like that sometimes. We don’t have control over it but we do have control of what we do today and how we can make our lives meaningful.

So when I say “eat steak everyday” I mean that we should do something that will make us happy each day. Whether it be something as literal as eating the best steak you can or spending time with your loved ones, making someone else happy, taking a nice walk outside, etc, just do something that makes you happy. Find your “steak” for today and eat it.

Each day is too precious to waste it being sad. So do something each day to make you happy!

* I realized that this article would be better in context. Most of the people who read my blog are friends and family who know a lot about me. For those who just happened to stumble upon this entry, here’s a little info about me.

I suffer from Pompe Disease. A rare metabolic disorder that has robbed me of physical abilities. I used to be able to run, walk, jump and breathe on my own. now I can’t do those. We I can breathe but barely so I need a machine to help me breathe twenty-four/seven. If you want more info check my about page. You can also read about Pompe here.

I wrote about my mom last Mother’s Day so it’s Dad’s turn today.

It’s hard to put down into words how much I love and appreciate my dad. I don’t think I’m that good of a writer to do him justice. Since it’s Father’s Day though I thought I’d try at least.

It’s a coincidence that one of the thing’s I’ll remember my Dad for the most is about how he supported what some can argue as one of the craziest things I’ve done in my life. It has something to do about love.

About 12 years ago I wanted to go to US. The reason I wanted to go there was so I can visit my ex-girlfriend whom I was trying to get back with. She could not come home because she was working on getting her residency. She said that she wanted us to see each other again to know for certain if she still loved me and if we can make our relationship work.

Flying halfway across the world to see a girl is crazy on its own. It’s crazier when you’re in my situation and you need to prepare really well just to make it happen.

My Mom and Dad agreed to let me go even if they knew it would entail great risk and resources to make my wish happen. They knew though that it was something that I had to do while I still could.

My Dad helped me put the trip together. It took almost a year of planning and saving. I saved most of my salary that year towards the trip. It wasn’t enough though. We would need 4 plane tickets plus travel expenses. My Dad, an aide and myself would fly to New York. Dad would make sure I got settled in before flying back to Manila. He would come back for me after a month and a half so we can start our journey back home.

My Dad stepped in and helped me out with the tickets. I’m not sure if he used his airline miles of if he had to pay for some but he made it happen. He also made sure I had everything I needed as well as gave me tips on what to do. His job made him a seasoned traveller and he had a lot of good tips on travelling, from packing to preparing for emergencies. He planned our itinerary that made sure I got there as soon as I could but without tiring me.

We were supposed to leave on September 9^th 2001. We had trouble getting the airline to approve the use of my BiPAP machine onboard the plane. It would turn out to be a blessing in disguise. Had we pushed through with our original plans we would have been in New York on September 10^th. My Dad was going to meet his friend the next day for breakfast in New York City. He would have been caught in the chaos that ensued. In hindsight it was God’s way of making sure that my Dad would be safe.

Something like that should have stopped most people. I was hard headed at that time and I still wanted to push through despite what was happening in New York.

Dad worried but he never waivered on his promise to help see my wish come true. A month and a half after we landed in JFK International Airport where I finally saw my ex-girlfriend again.

Much can be said about that adventure but I’m not really here to write about that. I brought it up because it’s a testament to how great my Dad is and how much he loved my brother and I.

It wasn’t easy not to mention cheap to help make the trip. God knows he could have used his money elsewhere and did something else with his time and effort. He wanted to see me happy. He knew it was important to me, hence it was important to him.

That’s just the kind of person he is. He values our happiness more than his. He has constantly sacrificed for our family. He works hard to provide the best life he can for us. He has never asked for anything in return except that we do the best we can with what he can provide.

I’ve met a lot of great men in my life. I know men who have built vast fortunes, received accolades right and left, men who in the eyes of many stand above most men. Not one of them in my eyes can ever replace my dad at the number one spot of the greatest men that I know. He will always be my number one hero.

If I can be half of the man my dad is I should be so lucky. He’s a tough act to follow. That’s why I never joke about wanting any other dad than my own.

Dad, I wish I could be as good a son as you are a father to me. In a few months you’ll be a grandfather, Steve’s son will be truly blessed to have a grandfather like you. On this Father’s Day I wish you good health and happiness. Know that you and Mom are the ones that keep me going. I would have have given up long ago if it wasn’t for your love and support.

I will love you always.

One of the reasons I made it this far in life was due to my brother Steve. I’m the eldest of what is technically four children. Two of my brother’s passed away. One died from a miscarriage and the other one died when he was two days old.

Steve is my only living brother. He was born four years younger than me. I’m supposed to be the elder brother but growing up it didn’t feel like it. Sure when we were kids I was the boss of him but that didn’t last long.

I got sick when I was ten years old. Pompe disease reared its ugly head during that time in my life. It was easy at first. I could still do a lot of the things I wanted to. As time went by it became more difficult though. Over the years I lost my abilities slowly until late in my senior year of high school I had to use a wheelchair already for long trips at the mall or whenever I needed to walk long distances.

Steve made that transition fun. I remember he was about 12 or 13 at that time. Whenever we’d go to the mall he’d push me so fast and pretend we were racing around. He understood what I was going through and never gave me grief about it.

He was patient all throughout the time I was adjusting to my disease. Often times he would give way to my requests even if he wanted to do something else. That’s just how he was.

One story though that up to now still resonates with me is a story about how selfless Steve is.

I asked him once “What if you won the lottery? What would you do with the money?” I told him prior that if I won the lottery I’d go out and buy myself a Range Rover. Without hesitation he answered “if I won the lottery I’d give the money to the specialists of Pompe Disease so they can find a cure”. I was ashamed.

Steve has a habit of thinking about others first before himself. I think he got that from my parents.

Now why am I singing his praises? Well for one because he deserves it. Second because in my own small way, this is how I can honor him on his birthday.

So happy birthday to the best brother a guy can have. Even though we don’t see each other much nowadays it doesn’t take away from the fact that I love Steve very much and wish Steve all the blessings in the world.