I’m Glad The World Did Not End

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.

The Value of Time

An old Datejust that belonged to one of my favorite people in the world.

One of my hobbies and passion right now are watches. My reason for liking watches is not about brand or the adornment it brings when you wear one. It’s about the symbol it represents.

One of the most important things in life is time. It’s one of those finite things that no amount of money can replace. Once time has passed it’s gone. There’s no bringing it back.

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Same Sex Marriage: Should We or Shouldn’t We?

Barack Obama became the first sitting United States President to publicly state his support for same sex marriage, a pronouncement with very historic implications.

I’m writing about it because it’s an issue I’m interested in. I am because it’s about human rights. I’ve long believed in upholding human rights and improving rights of women, children, persons with disabilities and now people with different perspectives on sexuality.

On one hand my Catholic faith tells me that a marriage should only be between a man and a woman. On the other hand my mind tells me that people have basic human rights and that one of them should be the ability to choose whom he/she lives with and forms a partnership with.

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The Importance of Perseverance

“The man who forms the habit of beginning without finishing has simply formed the habit of failure”

The above quote is from the book “Streams in the Desert” by L.B. Cowman. It’s one of the books I read on daily basis as part of the habit of prayer I’ve been trying to form thess past few weeks.

I’ve been guilty of starting a lot of things that I have not finished or followed through. I’m sad about it because some of them could have turned into something great.

I want to change that. I’ve realized that one of the most important things a person should develop is perseverance. We should always push forward and not give up on things that are worthwhile.

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The Gift of Suffering

By some miracle I made it to the 11 o’clock mass. I work nights and so my body clock is really screwed up. You will rarely see me outside before noon. So today was definitely an exception.

I wanted to go to the morning mass because the place I hear mass at, Club Filipino is just across the street. It’s very convenient.

I was happy to see that the priest, Father Christian was the one saying mass. I like Father Christian. He’s a young priest who has a good sense of humor. He also knows how to give adequate length yet insightful sermons. Unlike some priests who go on and on yet end up not making sense at all.

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Stumbling Blocks To Stepping Stones

Life is about choices. We’re put in situations and given things but it’s up to us to choose what we do with it. I’ve said this before during the several times I’ve been asked to do motivational talks. Life is like poker. It’s not always the best hand that wins. It’s who plays their cards right that often end up winning.

I was born with a rare genetic disease that has robbed me of a lot of physical abilities. I was fortunate enough to have been brought up with a positive disposition. I could use my sickness as a stumbling block or a stepping-stone to something great.

Some people tend to dwell on the negative things of a situation. In my case some people in my situation would tend to think about not being able to walk, or do things on their own. I admit I think about those things. I don’t dwell on them though. So I can’t walk or do most things on my own. Tough. No matter how much I cry over it though it won’t change anything.

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It’s What You Do Everyday That Matters

I love that you get to see such random things in Facebook. Today a friend of mine posted this quote.

bq. “Just because you go to church on Sunday… Does not mean you can act like an asshole the rest of the week.”

That made me laugh. It’s funny. It’s also true for some people. I’ve seen and heard about a lot of people who go to church religiously but the moment they step out they become monsters. There are also people who go to church religiously yet they violate the commandments of God like they’re mere suggestions.

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I Thirst

Last Good Friday, I got invited to participate in the “Seven Last Words” program that aired on ABS-CBN. I didn’t realize how much people were able to see that.

I was at mass yesterday when after the mass finished a lady approached me to tell me she saw me on T.V. during the program. It was nice to hear the kind words she said.

I’m posting the sharing I made for that program. It was for the fifth word “I thirst”.

Fifth Word: I Thirst

Despite being born with a very rare genetic disease called Pompe Disease, I consider myself blessed.

I come from a middle-class family. I was fortunate to have two wonderful and supportive parents, the best brother a person could ever want and now I also have a wonderful sister-in-law as a new addition to our family.

Throughout my 20 something years of battling this disease, my family has loved, supported and cared for me. I was able to finish school, get a job and be productive. I don’t think I could have asked them for anything more.

From my immediate family all the way to my extended family and friends, I’ve always felt loved and accepted. However as I grew older and got exposed to the world outside my family and friends I learned that the world or at least some parts of it is not as accepting.

I realized that I was different. My disease has caused great disability and that disability made it difficult for some people to accept me as their equal.

From the moment I step out of the door of our home, I venture into a world that does not automatically see me the way my family and friends do. There’s a stigma or a perception that is associated with someone in my situation.

I was taunted and teased as a kid. As I grew up the taunting and teasing lessened. However other things replaced it. Some people would look at me with pity. They think that just because I’m in a wheelchair and can barely move that I am a person who has very little worth. All they see is the disability and not the person inside.

One of the things I feel bad about is that sometimes when I am outside, whether it’s in the mall or just out side the place I live, some people would look at me and instead of talking to me ask the person I am with “uy, ano sakit niya? Kawawa naman”. They automatically assume that I am not able to converse with them or answer their questions in a rational way. But I can. I am probably the best person to ask about my condition. Also I think I am smart enough to answer their questions.

Sometimes society has certain stereotypes about people. People with severe disabilities should be looked down with pity.

I am proof that society shouldn’t.

Despite my challenges and with my family’s support and tremendous faith in God, I’ve grown up to be someone that I can be proud of. I’ve managed to finish school. I graduated from college. I am gainfully employed and contribute to society. I’ve done things that most people haven’t.

It took a lot of hard work but I managed to make something of myself. God showed me through the countless blessings he has bestowed upon me throughout, that he does not see me any differently from his other children. He loves me just the same.

Apart from my physical challenges, I am no different than most guys my age. I feel and want the same things most “normal” people do. I want to be a productive member of society. I want to be a good Christian. I want to love and be loved. I want to have a family someday. I want to make a difference in other people’s lives. I want to grow old and during my final moments in this world, say to myself that I have lived a life worth living.

I know that like other people we have all the things we want in life. I know that and accepted it as such. But like most people all I ask is the opportunity to try and pursue my dreams.

In a way some parts of society right now are like the soldiers who gave Christ sour and cheap wine as he yearned to satisfy his thirst while carrying the cross. Some parts of society treat people such as myself as those soldiers treated Christ, by offering them half-hearted gestures.

I look forward to the day wherein our society doesn’t look at a person such as myself and see his or her disability. Instead society looks at him or her and sees the person and what he or she truly is, a gift from God who deserves the same respect and love like everyone else.

I look forward to the day wherein society treats us like equals and offers us not cheap wine but the same wine as what they would have for themselves. Our lives are as valuable as anyone else. It might not be apparent from the surface but when look past the shortcomings you will see the true value that is in everyone.

Each person has a unique gift that is his alone. No two people are alike. Each one of us carries a beauty that is all our own.

I am not alone. There are countless people such as myself who either suffer from a disease or something else that changed their lives, people who walk this earth a little different from most. We all want to be accepted. We all thirst for love and empathy as you would give others. We ask not to be treated special but to be treated as equitably. We understand we are different in some aspects and need consideration for those things but for the most part, we are like every other person. We will continue to carry our cross, bu we thirst for your love.

The Year That Was, The Year Yet To Come

I want to start this letter by first wishing all a belated Merry Christmas and a Happy New Year.

2011 was a roller-coaster ride of sorts. There were some bad moments but definitely a lot of good moments. In some aspects I’d even say this was the best year yet.

The highlight of 2011 was the wedding of my brother to his long-time girlfriend and now wife Imee. Their wedding was held last April. It was also my first time to be a best man.

I was really happy to see my brother finally settle down. His might only be the only wedding my immediate family sees, so I was really glad it turned out well.

One of the best things this past year, just shy of my brother getting married was that I finally got my hands on a Trilogy 100 ventilator. More than the fact that I was finally able to buy it, the journey towards getting it was much better.

Several friends all pitched in to help me get it. A couple ran marathons to help raise funds for it, several donated from their own personal pockets. All-in-all my friends raised about half the amount I needed to buy the new ventilator.

The other half was courtesy of Philips Respironics and their local dealer here. Through the help of their regional marketing manager, I was able to work at a deal with Philips to help them promote the Trilogy 100 locally in exchange for a hefty discount. That was really something else.

I’ve been enjoying the Trilogy 100. It’s allowed me more freedom to go out and live my life.

I’m grateful that this year saw a lot of blessings, in family, work and other aspects of my life.

It’s taken some adjustment to life at home. My brother has left the nest so to speak, leaving just my mom, dad and I. It’s been a little quieter at home, but life has to go on and all things must change.

Work has been ok. I’m grateful for that, although the end of the year brought a little anxiety. I’m technically moving to a new employer. It’s the same job but now I’m working for my employer directly instead of through a third-party company. I wasn’t sure what was going to happen but in the end it looks like things are working out. I’ll be starting on the first working day of 2012. Hopefully this kick-starts the New Year with a bang.

This year has been blessed. I chose to focus on the blessings rather than the challenges. I’m grateful for the family, friends, colleagues, clients I’ve spent the past year with. All of which have touched and changed my life in one way or another.

For the coming year, I pray for blessings. Specifically for stability at work, better health not just for myself but also especially for my family and those who are close and dear to me.

There are all these talks that 2012 is the year that the world will end. I really don’t know. Only God knows when the world will end. Sometimes it seems that it’s coming true. A lot of disasters have come, floods, earthquakes, wars, etc. It’s quite scary. However I choose to believe in God. I choose to hope that good things have yet to come.

These disasters and unfortunate events should only remind us to do better. For things that are in our control we should strive to do the best we can and trust that everything will work out in the end. For those things that are not, we just pray and trust that God is looking out for us.

I wish you all the best. I wish you health, wealth, love, happiness and peace. I hope that the coming year blesses you as much as this year has blessed me, if not more.

In the coming year, I hope to spend more time with my family, exercise more, eat healthier. I want to be able to work smarter not just harder or longer. I want to rekindle old relationships that have been set aside due to time or other circumstances. I want to meet new people and build new relationships. I want to experience new things. Most of all I want to do things that matter, not just to myself but the community too. I want to make a bigger difference in people’s lives. Oh if possible, maybe improve my love life.

Happy New Year to all! Be safe as you celebrate the coming year.
God Bless!

33

So another birthday has come and gone. This one is different from the past few years. I’ve always had a party during my birthday for the past so many years to celebrate another year that has passed.
This year I didn’t feel like having a party. In fact I wasn’t really in the mood for any celebration. Turns out this year was one that was simple and yet quite a great birthday.

I woke up at 6 a.m. I couldn’t really sleep much since my body clock is screwed up. I had to be up early since apart from being my birthday I was going to be a godparent to my friends’ twin boys.
Allan and Gay, two good friends of mine have been blessed with twin boys. Emilio and Javier. They chose me to be one of their godparents. It was quite an honor for me since they are close friends of mine and it was my first time to be a godparent to twins.
The baptism ceremony went well. The baptistery was packed with family and friends to witness the welcoming of Emilio and Javier to the Christian world.

After the ceremony I stayed behind and went to mass. I had not had a chance to go and hear mass yet so I heard mass. After I mass my aides and I went to light candles and say a prayer. As we did, a man approached us and asked about my condition. He then after offered to say a prayer for me. I humbly accepted. After the prayer we spoke for a while. He said that something inside just compelled him to ask if he could pray for my healing. I told him it was much appreciated. Especially since it was my birthday and that his prayers were a nice gift.

I proceeded to the reception of the baptism after mass. I was able to spend a nice afternoon talking to some old friends that I have not seen in awhile. I saw Mai and Allan (newly weds, congrats guys), Pia (an old friend from awhile back) as well as others. I also had the pleasure of meeting Gay’s sister Joy for the first time. She’s an oncologist practicing in a hospital near where I live.

Dinner with my family followed after the baptism reception. My brother’s gift to me was a wonderful home cooked meal consisting of pumpkin soup, salad, roast chicken, pommes frites, mac and cheese and French green beans. Yum! Dessert was special cupcakes and a chocolate birthday cake courtesy of Camille (my aunt whom I treat like a cousin coz she’s younger than me) and Cha (good friend of mine). We were joined by Nes and Trina, two of the closest friends I have.

It was a simple dinner filled with laughter and stories. Candles were blown, cake was eaten, wine was drank, everyone was happy. It was an intimate dinner.

On another note, I was touched by the simple gesture that my newest aide, Anthony made. He gave me a small statue of the Mother Mary and told me that he had it blessed. He said it wasn’t expensive but it was full of his prayers for me. I was touched. I don’t ask for anything from my aides so this one was really appreciated.

It was a wonderful birthday. Simple but filled with good things.
Thank God for 33 years of life. Thank you for the gift of family and friends. Thank you for all the well wishes and warm greetings. I feel blessed to be living my life.