There was once a time when Monster Inc. ruled the TV. Not Xbox, not Netflix. Just Monster Inc. It played a lot that I could almost memorize the lines, I almost know most of the characters. Marcus would watch this Pixar film day in day out and his reactions remain the same as if it is his first time every time. And I would pretend the same thing. I would act scared when the robotic kid would shriek during the scare simulation scene. I seem to miss those days.
Marcus has since upped his entertainment. It’s now Xbox with Call of Duty series leading his choices–shooting game, I know. More so recently that we finally had success in redeeming the Xbox Live Gold prepaid subscription which by the way was purchased out of his coin bank. Yes, he had P2000 out of it. It was a matter of talking with Microsoft’s chat support agent who incidentally was Filipino. The solution was just to change the region on my account from Philippines to United States and voilà, no more error. Nada. Nil. Gone! Funny but Microsoft’s current online FAQs related to this error do not mention anything about this very simple solution. I wonder why.
The activation happened on a Labor Day. It was while I cherish my first ever legit Labor Day time off after a long time working in the BPO. This time there is no need to compete with anyone for vacation slots, no need to fake sickness or get creative with alibis. It’s one of my few new benefits. A day off away from monitoring calls all day is always a bliss. It was one day sans the monsters disguised as bad English, moody agents, rude customers, and anything in between. I felt bad that I ended the chat after realizing too late that I need to answer a survey for the very helpful Microsoft chat support agent. Thanks a lot anyway dude, you made our son very happy. Now we know what to do when we redeem another code when his subscription ends 12 months after.
Mood: 5/10 Honks! (Dark clouds ahead on a hot summer day.)
What started as a table discussion in the US has finally materialized. Yesterday, Marcus’ genetic testing was done at UP-NIH. It took us several exchange of emails with support groups (thanks to you guys!) and hospitals and leg work that require trips to Metro Manila to exhaust our options in finding an alternative to this expensive procress. Now Marcus blood has been extracted and would soon be tested to determine if his strain is the one that the new DMD drug in the market can cure.
But testing is one thing, the medication is another. We keep our hopes high yet our expectations realistic. It’s waiting game for now until 3-4 weeks after. Que sera sera. We’ll make our next steps whatever the outcome is.
Mood: 3/10 Honks! (Survived Tuesday.)
Just saw this one on Facebook and it made me sad yet at the same time happy that such campaign to let everyone know how a simple gesture could go a long way. This is something any parent with a kid in a wheelchair would appreciate big time.
Also on Facebook, Lad Bible posted a video of a guy in a wheelchair doing dips in a gym. Looking at the weight he has to deal with is like me and Marcus combined. Dips has been one of my favorite routines since I started working out. I still do a variation of it at home and Marcus’ therapy session also includes same exercise though assisted by physical therapists. He just finished his second day today.
Mood: 2/10 Honks! (Crazy schedule this week.)
I can see weights. I can see treadmill. All familiar equipment so it must be a gym yet not. And as much as I’d like to I’m not returning to working out in the gym either. We are in the place that is going to be Marcus’ regular hang out for a month at the very least. It’s St. Cabrini’s rehab center. Our first time here, our first time to have him undergo physical therapy.
Our expectations are high but realistic. We hope the next sessions would improve his movements and allow him to be more independent. So that he could sit up on his own coming from bed in the morning. So he could sit straight longer. So he could extend his leg even while in a sitting position. All the basics that we tend to ignore but a struggle to kids like him.
Mood: 2/10 Honks! (Sleepy but this is worth it.)
We finally made our first trip to see a physical therapist for Marcus but it wasn’t successful. The doctor who was supposed to check him already left as there were only few patients yesterday and so only the staff at the front desk of St. Cabrini rehab accommodated us. Upon showing the other doctor’s referral to the person in charge I realized the guy seems familiar with DMD when he started asking if Marcus has other brothers or nephews who could possibly be affected with the same condition. Not wanting to be heard by Marcus I typed something on my MS Word app and showed it to him. He smiled and acknowledged. This is one of those awkward moments when we are asked at hospitals during screening or interview. While Marcus already knows, that particular anxiety still remains in us when such question comes around. Thanks to my recently downloaded app I now have an instant flash card for moments like this.
But he does really know. That same afternoon, we dropped by the supermarket before going home and we left his mom at the grocery while we window shop at the furniture store. Passing few beds later he asked, “Why was I alone inside the tummy? Why are others two? How many can fit in there?” These are same questions he would regularly ask and as expected the one followed: “Can we adopt another?” He’s been asking for one since then. Maybe we’ll foster soon but at this time, however we’d like to, it is not a priority.
This weekend is the celebration of Adoption Consciousness Week. More power to all adoptive parents who believe that family goes beyond blood.
Mood: 2/10 Honks! (Skipped running to let my left leg recover but covered almost the same distance taking a morning stroll with Marcus. Not bad.)