This must be the most striking Your Memories On Facebook picture I’d ever have. This was three years ago today when we picked Marcus’ red wheelchair in Festival Mall. He can still stand and walk back then. Time flies, time sucks.
Skip the Avengers: Infinity movie and save money. Besides that the sentence rhymes, it was my plan this weekend after our company treated us employees to a blocked screening at the nearby Vista Mall coming from a Friday night shift.
Other than having a bag of bland popcorn–I passed on the salt and flavoring–and a warm bottle of orange soda for breakfast, the movie treat was a deviation to my normal weekend diet, it also wasn’t Marcus’ idea of how his Sunday would be like.
I thought he and his mom already worked out an alternative when he said before going to bed Saturday night that he discovered he could pre-order Avengers: Infinity War on Xbox Live. Sounds like a plan, a cheaper plan of just $15. All he needs to do was wait until the movie becomes available online.
But I should’ve have known better that waiting doesn’t work for him. I learned sooner that Marcus is still looking forward to watching it in the cinema. Wifey relayed the message minutes before I hit the sack that night. “Your son asked if I could carry him to the seats if it’s just the two of us and I answered yes, of course. That’s his concern,” she said but left her statement hanging.
“So what’s your concern?” I asked, fishing for unstated needs–force work of habit kicking in. “That if I could actually carry him,” she replied half firm, half joking. We had a good laugh out of it. I know my wife’s humor as much as I know her hidden strength. I know she can carry Marcus no doubt.
So I went to bed that night still with the same initial plan–drive them to the mall, wait for them outside until the movie ends. I was ready to kill time with my Netflix downloads and spare purchasing another Avengers: Infinity War movie ticket in the process.
That last conversation stuck though. Our routine in the cinemas we’ve been following for the past years since the wheelchair kept playing inside my head until the next morning while I eat my oatmeal-raisin-peanut butter-banana combo to compensate for the other day’s toxic choice.
Buy popcorn for Marcus, get snacks for us, transfer him to his movie theater seat, carry him to his wheelchair if he asked to go the toilet, then settle back again to enjoy the film. It’s been like that most times. And lately he’s gained more weight.
I need to be in the cinema. Period.
So that’s how I ended up watching the same movie twice in a row. Good thing the comfy Solenad Cinema 3 allowed me to snooze every now and then and to see Marcus enjoying everything–the Avengers and Guardians characters, Stan Lee’s cameo, Blazing Cheddar popcorn, and his favorite reclining seat–was worth spending an extra 400 pesos.
The Avengers: Infinity War is a dark movie and it could disappointment people especially those who expect a triumphant hero at the end. This movie is a game changer. Thanos has to die.
There’s no stopping time as Marcus turns ten. He’s become smarter and continue to be more expressive. He now knows what he wants and if he had his way, he wants things to happen.
Even before 2018 started he was already specific with his plans for his birthday this year. He asked if he could celebrate it in Acacia Hotel Manila with just the three of us–introvert parents breed introvert kids, don’t we? Wifey tried to offer other choices but Marcus has made up his mind. Must be the pool or the rooms or maybe it’s the hotel’s proximity to Festival Mall or ATC, his comfort zones since then. Or maybe it made a mark on him when we almost lost his favorite plush Frankenbob toy the last time we were here but staff found and returned it. Whatever, he just loves the place no doubt.
His affinity for this place in Filinvest Alabang over the others seemed to prove worthy once again. A grand welcome greeted him when we stepped in our room which would be our home in the next three days and two nights. Staff prepared the room for Marcus with balloons and a whole chocolate birthday cake. It was the most number of balloons he ever had. Staff spoiled him more with complimentary desserts they delivered to our room in the evening.
This birthday would have been a whole lot better if only we could promise to give him his special wish he made the morning before we set off on our staycation.
“What’s your wish?” we asked him before blowing his Homer cake–a pink sprinkled Krispy Kreme donut wifey designed as a cake with one birthday candle in the middle. Still in his pajamas with his ruffled newly dyed golden hair, he said, “That I could walk and a PS4.” I smiled and cheered but I know that wifey too silently wished and felt the same thing I did as I finish the video recording. It was something we both expected our son would say but one of it just won’t happen in this lifetime however hard we’d want to. A miracle is all we could wish for.
Happy birthday son, we still love you, we are here for you.
Marcus skipped his therapy this week but he left his physical therapists some pizza the other Friday to celebrate this birthday.
Mood: 3/10 Honks! (Hope Marcus doesn’t catch the bug. Wifey and I got the sniffles.)
It’s been my dream to do something physical with Marcus, run with him. But his wheelchair sets some limits among others. Weather and outdoor condition are other factors as he’s had history of allergic reactions.
Yesterday seems to be the perfect condition although it was a bit windy late in the afternoon. We set off anyway, stepped out of the house with my running shoes and Marcus looking forward to see the goats along the way.
I ran and pushed at the first kilometer until the goats appeared. Then it was mostly run-walk from then onwards. I let Marcus cherish the moments to see nature and animals beyond Ultra HD 4K.
If only we had this Adaptive Mobility Freedom Push Chairswhich I saw first on Facebook page of Athletes in Tandem. This push chair would allow me to run with Marcus better and safer. His current wheelchair rattles and it poses a challenge when going uphill thus the need to take extra care not to over tilt him backwards. The mobility chair’s price is stiff though at $900 excluding shipping since it would come from USA. Maybe soon.
We covered seven kilometers yesterday so this red wheelchair is good enough for now.
Mood: 2/10 Honks! (Today’s agenda: Learn the floss. (No) thanks to kid’s Fortnite game.)
As parents, we play different roles. At some point we are either any or a combination of being a superhero, a soldier, a doctor, a nurse, a driver, a bank teller, a teacher, a preacher, a clown, and a friend. Our children expect us to be as flexible as Mr. Fantastic and our children keep a keen eye on us day in day out. What we do is what they would become.
It is imperative that we pay attention to our actions. The sooner we realize that we have greater responsibilities the moment a child becomes part of our lives, the better. Parenting is complicated, I know, and it is normally easy on theory but a whole lot different when everything happens right in front of your face. Kid cries, kid wants food, kid poops, kid pees, kid makes a mess. And kid gets sick. And some kid, later on, would have special needs.
There is no turning back. Hard truth. It takes someone strong, wherever that strength may come from, to say “I can do this.” A good parent commits, a good parent loves…without condition. Child first, everything else takes a backseat.
It took some time to get my acts straight when it comes to alcohol. Several times I was behind the wheel under influence with Marcus inside the car, I had days I missed getting him to bed because I can barely hold my own, and there was one day I missed him blowing his birthday cake because I’ve passed out. Been that bad father.
Honestly, I somehow miss drinking with friends. Those days when cheeks would get warm and tight. Those days when eyes drop halfway, then the world starts turning. Those days when inhibitions are lost and words come out freely and without care. All for the heck of doing it. In vino veritas. But perspectives and priorities changed.
I haven’t stopped drinking entirely but since the red wheelchair came the drinking became less and lesser. Occasional isn’t even a close definition. I could count with my fingers the number of times I went drinking especially last year. Running and working out helped me avoid the urges. (FYI, six bottles of low-calorie beer is equivalent to one meal or a third of a day’s calorie allowance. That’s excluding finger foods!)
I am alcohol-free, almost. I’ve made myself 24/7 for Marcus as much as possible. I’m his fireman who would jump the pole and would be there for him in no time. I would only drink if Marcus is not around or if I know Marcus’ needs are all taken care of. I think I could now qualify as best parent yet not. Others have far challenging stories. So to all of you out there who continue to make sacrifices and continue to love their kids with special needs, hats off to you. Happy Sunday.
Timehop continues to amaze me with what it can pull up from my past posts years ago today. Some cringeworthy, some funny, some sad, and some funny kind of sad like this one from eight years ago. This was the last balloon I’ve ever bought for Marcus which got away from his grip just before we left MOA. Few years later though we’d buy balloons again for him, this time only red balloons–the symbolic red ballooons we released on our first celebration of Duchenne Awareness Day.
We don’t have balloons today but the significance of this day remains in our hearts as we remember everyone with DMD. God bless all these children and anyone–especially their parents–who commit in making sure this progressive condition doesn’t stop them from enjoying life.