Category: Ramblings

I want to wish my dear brother a happy, happy 25th birthday. I’m truly lucky to have a brother like you. I’m grateful for all these years that you’ve shown me how to be a good brother. You’re the epitomy of what a good brother should be. Kind, generous, loving and patient. I know it’s not easy to have a brother like me. It takes a lot of understanding and compassion to live with a brother who has a severe disability and yet I’ve never heard you complain about it. Not once.

One favorite anecdote I have of Steve is this.. When we were kids we had one of our usual chats. The topic of our discussion was what would we do if one of us won the lottery. My answer was “I’m going to buy a Range Rover”. I asked him what he’d do. His answer…”I’m going to donate the money to find a cure/treatment for Pompe.” Damn.. I was sooo ashamed at that time and in awe at how my brother loved me. All I could think of was a Range Rover and all he cared about was to see me get better. Now, how’s that for a brother.

To Steve, I wish you all of God’s blessings. I wish you enough. I hope that you get your hearts desires in the quantity that won’t make you take things for granted. I wish that life will be as good to you as how you are good to me.

I couldn’t ask for a better brother. For that I and our whole family is blessed to have you in it. I love you.

I got an SMS message from a friend of mine who happens to be the head of my group in Singles For Christ. We had our weekly meeting the night before. He invited an old friend of his to join us. His friend was looking for a group to join to hopefully uplift her spirituality and faith.

Our meeting went very well. I was able to share some, ok a lot of the life lessons I’ve learned dealing with Pompe. Apparently she liked them and helped her a lot.

She sent a message to my friend thanking him for inviting her and sharing that she felt better after. She mentioned that she liked what I shared and that in a small way it helped her.

That felt really good. I’m glad that through the struggles I’ve gone through and continue to do so, I learn things that I’m able to share with other people. Somehow it manages to help them. That’s good.

A life lived making a difference to other people is a life worth living. Glad I can live a life like that. Glad I could help.

A reporter from one of the more popular T.V. stations came by last Thursday to interview me. She wanted to do a story on Pompe. Although it wasn’t really assigned to her she said she was at liberty to submit stories to her boss and maybe it could be aired.

As long as it’s for Pompe I usually do the interviews. It’s to help build awareness here in the Philippines where Pompe is really unknown, at best a footnote in medical books. A lot of people have not heard of it so when opportunities like this come, I take it. In a small way, it’s my contribution to the Pompe community.

The interview went well. It was shorter than some of the ones I’ve done in the past. It hasn’t aired yet and I haven’t seen the final product. I hope it comes out well.

Funny thing though… One of the last few questions that the reporter asked me was something like.. “Do you ever think you’ll consider getting married? Having a family?” In my mind, I wanted to reply “If you say yes, then yeah I’ll probably consider getting married”. Hahaha. Let’s just say that the reporter was really cute. Of course I didn’t say that to her. Not with the cameras rolling. Plus I didn’t know if she’d take that well. She might have slugged me and it would have been caught on cam.

I just answered as truthfully as I could, saying that I really don’t know if I will. Only God knows the answer to that. If it were up to me, I’d like to get married and have a family. There’s nothing more I want than that. But I guess I have to consider things seriously and to add to that I have to find someone who can understand what I’m going through.
I’m not closing my doors to the possibilty. I’ve always believed that there’s always hope. We’ll never know what will happen in the future.

I’m preparing myself though for the reality that I may never get married or have a family. I just have to accept that if it’s God’s will.

I hope the interview comes out well and that the reporter does a good job with it. Pompe awareness is really important for me. I hope it gets the message across.