A metaphor and a reality.
***
Mood: 2/10 Honks! (Rest, for tomorrow is one of those days.)
Taking the plunge
Here Comes Frosty the Snowman
Everyone could already smell the yuletide season. It is almost here. Well, at least for most Filipinos who start to feel Christmassy as soon as we flip our calendars to the first ‘ber’ page of its year. Yes, it’s as if September is just a blink away from the time we celebrated the New Year’s Eve. Time does fly. But this year I bet that Marcus and I were ahead of everyone else.
By the early days of August our car’s CD player has been on repeat mode. Marcus’ latest discovery was the repeat track menu. I had to reveal it to him after I got tired of pushing the back button to play Bebot over and over again for him as for some reason he became a sudden fan of Apl.de.ap which makes me wonder if his seemingly serious resentment of the Chinese activity in the West Philippine Sea influenced him–surprising for someone his age. Things changed though when he brought back home the BEP CD so that he can play it on our audio player. Since then the next most-abused disc is the one by Alvin, Theodore, and Simon. Yup, you got it, it’s the Chipmunks and their Christmas song album. The unmistakable voices of Alvin and the Chipmunks played in our car—in the middle of August, every day, every trip to school, every time he gets to be in the front passenger seat. And among the Chipmunks songs, Frosty the Snowman became his favorite driving song.
I have tried but my negotiation skills were of no use and so to join the band, so to speak, I would sing the the song while driving–my attempt to annoy him. So far Frosty the Snowman continues, either I can now sing like a Chipmunk or he just opts to ignore my strategy. Chances are, it is the latter. To concede, and to share my last song syndrome, let me share the song’s lyrics (thanks to Metrolyrics.com).
Hey, fellas
Why don’t you tell the kids about your ice cold friend?
AlrightFrosty the Snowman
Was a jolly happy soul
With a corncob pipe
And a button nose
And two eyes made out of coalFrosty the Snowman
Is a fairytale they say
He was made of snow
But the children know
How he came to life one dayThere must have been some magic
In that old silk hat they found
For when they placed it on his head
He began to dance aroundOhh, Frosty the Snowman
Was alive as he could be
And the children say
He could laugh and play
Just the same as you and meFrosty the Snowman
Knew the sun was hot that day
So he said, “Let’s run
And we’ll have some fun
Now before I melt away”Down to the village
With a broomstick in his hand
Running here and there
All around the square
Saying, “Catch me if you can”He led them down the streets of town
Right to the traffic cop
And he only paused a moment when
He heard him holler, “Stop”Oh, Frosty the Snowman
Had to hurry on his way
But he waved goodbye
Saying, “Don’t you cry
I’ll be back again some day”Thumpety, thump, thump
Thumpety, thump, thump
Look at Frosty go…”
Frosty the Snowman ends with “And he waved goodbye, saying, “Don’t you cry I’ll be back again some day” but thanks—or no thanks—to the stereo’s repeat track feature, Frosty returns faster than we realize that it is September all over again.
***
There’s another thing that makes us one more step ahead of the others—our Christmas lantern. Kudos to procrastination, our lantern and the Christmas bulbs we placed outside our house are still out there since last year. I really can’t wait for September to start so that we won’t be getting weird stares from our neighbors unlike when we accidentally hit the lantern’s switch in the middle of March.
***
Mood: 3/10 Honks (They should have shown Pixels in Christmas.)
Yin and Yang
There is always yin and yang, there is–or should be–always balance. This is the message that I realized from just two simple stickers.
On Sunday I got a break from the weather and was able to finally give the car a wash and wax session. And with glasses all cleaned of bugs and sap and dust and bird droppings I was able to place the sticker that will soon make our vehicle, hoping that considerate people still outnumber those who aren’t, to be a legit occupant of that PWD (People with Disabilities) parking slot. (It should be noted that this sticker is meant to complement the government-issued card we got recently.)
Unexpectedly, after I was done with my workout this morning the attendant gave me their gym sticker. This surely will cause some raised eyebrows at the parking area but I’m sticking it anyway.
So yes, simple things could remind us that there is yin and yang. Life is balanced. Life has opposites. Sadness and happiness. Sickness and health. Father and son. Life and death. Oppss. My avid readers–all five of them–said that my recent posts have been dark and sad so I’m striking out the last juxtaposition. Cheers.
***
Discovered today that I can run on the treadmill and read an ebook at the same time. Had an interesting 5K, thanks to Angela Marson’s Silent Scream. Yes, been a fan lately of discounted Kindle books.
***
Mood: 3/10 Honks! (What do ‘ber’ months has in store for us?)
Life And Death And Marcus
At some point of their growing up years kids will have so much range of ideas running inside their heads. During this time their questions would reveal their developing perspective of life…and even death.
Like two weeks ago I had weird and unexpected questions from Marcus. Passing by this one establishment along our usual route to school he asked, “Daddy, what are those boxes for?” He was pointing at the funeral parlor’s caskets on display. “That’s where the dead bodies are placed,” I said plainly with the hope to dismiss the topic once and for all.
But obviously he is not done yet as another day came and this time his queries were more deduced. “Daddy, when am I going to die…will everyone die?” Trying to be subtle I answered, “Yes, when people get old, we will eventually die.” Then he followed up, “So why is lolo ‘hel still alive?”
For some strange and creepy coincidence my 80-year old father had a close call about a week after that discussion when he slipped and fell hard one rainy afternoon. Thankfully his tubes have been removed just recently and at this moment is recovering in a hospital.
Then the other night wifey told me a story. She said that while preparing to go to sleep, out of nowhere, Marcus told her, “Mommy, when I’m old and gone, please name your new baby Marcus. That way, he will still be me. I would still sleep beside you, I would still be able to check my toys.” It was something that gave me mixed emotions. For one, I find it funny as it shows his innocence, his current lack of grasp of life’s timeline. The freaky part is that it made me recall Robert De Niro’s Godsend. The sad thing is that it could be imminent and when that happens there will be no new Marcus. Probably just me and wifey and his toys.
I wouldn’t wonder though if Marcus still does not fully understand life and death because even adults do not. Life is so complex that we won’t know all about it until we have lived it to the fullest. Death will remain a mystery until have experienced or got closed to it. That’s life, that’s death.
***
He now has a PWD card. The bright side, he gets to watch free movies every week among other benefits.
***
Mood: 2/10 Honks! (God has been testing us and so far has not failed us.)
Why is he rich?
Life is never dull especially with kids around and their growing curiousity of the things around them. Like today while on our way back home from school Marcus had this interesting question:
Marcus: Daddy, why is Manny Pacquiao rich? Is he a criminal?
Me (Thinking): He will commit his first crime once he runs for senator. Heaven forbid.
Of course, I explained how Manny got his wealth.
***
Mood: 2/10 Honks! (I only I were a sponge that could absorb his dystrophy.)
We got new wheels
The information is overwhelming and the more we learn about muscle dystrophy the more we begin to embrace the challenges that need to be dealt with. Besides the anxiety that we feel every single day when we send Marcus to school, thinking what if he falls in the class, in the playground, what if he gets pushed around and so on, we also have to start recognizing the behaviors that are associated with people with DMD.
Tell-tale signs that we once dismissed as just part of a growing up kid’s life are now becoming to make sense. These signs we realized just now are psychosocial issues commonly exhibited by people with Duchenne Muscular Dystrophy or DMD. According to www.parentprojectmd.org, there are things to watch out for:
- He has delays in language development or problems with communication.
- He has difficulty interacting with others and/or making friends.
- He is often angry, argues a lot, or is very inflexible about what he wants to happen.
- He is forgetful or absent-minded, or has difficulty paying attention.
- He is very quiet and withdrawn, and prefers to be by himself.
- He is very fearful or anxious.
- He often has a negative/pessimistic attitude or says bad things about himself.
- He has difficulty learning new academic skills or earns poor grades.
- He has rituals or routines that have to be followed in a particular way.
- He has difficulty sitting still, is impulsive, or very impatient.
(See article here.)
All these are behaviors that we have observed from Marcus even before we learned he has DMD (likely). There are two traits, however, that are just starting to come out: difficulty starting to learn new academic skills and saying bad things about himself.
While there were some challenges in school, so typical of a preschooler, grades weren’t among our problems. In fact, Marcus finished his three years in preschool being on top of his class, albeit a small one. The possible reason he is now beginning to fall back is because we have stopped putting some pressure on him to excel in school. We learned that writing alone could stress out the muscles of those with DMD which perfectly explains why Marcus complains getting tired after writing for a couple of minutes.
Our trip to the doctor just this last Thursday also confirmed that Marcus would soon find writing using a pen or pencil a hard task to accomplish. She cites one patient that have to eventually ask to be permitted to write on a tablet instead on paper while in school. She said that dropping out of school due to difficulty in catching up with the other kids is a possible scenario.
On this same visit we finally had all the recent tests interpreted. The one that struck us the most is the CPK result. Marcus’ blood test was off the chart. According to the doctor, there is so much dystrophin wasted by Marcus’ system as seen from his CK reading—his was around 15,000 when a normal range should be around 150 units per liter. It was that bad. For now, the doctor prescribed a couple of supplements that should help somehow balance our kid’s system. He is to start taking Coenzyme Q10 for his heart and Diamaxin for his muscles. In 3-6 months, we will see if these drugs will improve something.
***
Mood: 5/10 Honks! (Off to Batangas, first time to check the lot up close.)
The Wheelchair Didn’t Stop Them
On my way home this morning I saw a mother pushing her kid on a wheelchair along the side of the road and it’s one of those instances where for a couple of seconds–while behind the wheel–I would ponder how life it’s going to be for Marcus.
Since the day we found out about his condition the sight of wheelchairs has made me feel sentimental. Anywhere I see it, I would remember Marcus. Gladly, there are days when it’s not always that bad and sad–like today, a news inspired me.
The article from abs-cbnnews.com features a guy named Carl Adrian P. Castueras who recently graduated cum laude in UP Los Banos. He was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was eight years old. Shown behind him is his proud mom who according to this same article had to stop working as a marketing executive from the time she learned about her son’s condition to spend more time with him. Well, obviously her efforts and Adrian’s dedication did pay off. Good job to you brave mother and more power to you Adrian. (I read this news while waiting for wifey to finish helping Marcus prepare for school.)
Another story that had me realize that there is still indeed life after DMD–that is after learning about it–is a video I saw on YouTube.com just a couple of weeks ago.
Aaron ‘Wheelz’ Fotheringham is a guy who despite his spinal injury–not due to DMD though–was able to successfully pull off a a back flip on his wheelchair. Here’s the video here.
I now begin to see a brighter perspective and hope that life ahead won’t be that miserable after all just by looking at these inspiring news of people being able to overcome their own disability. While I do not expect anymore for Marcus to graduate as the top of his class or become another person who can back flip his wheelchair, I do expect that he will be able to live his life to the fullest by accepting his limitations and making use of whatever capacity his mind and body will allow him to do.
***
Mood: 4/10 Honks! (We tried Call of Duty: Black Ops but it’s really not for him yet. Game’s too graphic.)
The Oldest Story We Can All Relate To
Inspiring stories about parenting, its challenges, and how people are able to deal with it are all over but there is one particular story that has become my favorite.
There once lived a couple who never had a child. They were already old and the idea of having one seems more impossible as years go by. The day, however, came when someone paid a visit and who then told the husband that they will soon have a son.
His wife who overheard the conversation couldn’t believe her ears. The news to her was unreal. She believed that she cannot bear a child anymore but her husband who is a man of big faith knew otherwise.
And a miracle did happen. The once childless couple soon became a parent of a son. He was a gift and they love him so much.
Years passed and something would put them to the test. The man was told that their most cherished son needs to be offered and he received instructions how it would be done.
The fateful day arrived. Overcoming sadness as well as reluctance the man proceeded as planned. Taking his son with him he climbed the mountain where everything would take place. All set, the altar ready and his son tied up, the man raised his knife to execute the ultimate sacrifice.
Just as he was about to take his own son’s life, a voice from heaven soon thundered as an Angel ordered, “You have proven yourself. Let go of your son and from the bushes you will find a lamb. Use it instead as your offering to God.” This is the story of the couple Abraham and Sarah and their son, their only son, Isaac.
I never knew that a story from the biblical period, one that I have read to our son several times before, will soon be the same as our condition sans the altar and the need to slay a son–even a poor lamb. The similarity is in how an unexpected situation would test our faith.
It was how it felt like when my wife and I first learned about Marcus having a progressive crippling condition. We questioned God, we asked so many questions. We asked why us. We asked why of all children, why Marcus. We hoped that we would soon find the answers.
For now we cannot do anything but accept the fact that this predicament we are in is a test–a rather difficult one–that we need to pass. It is our own cross that we need to carry and a monster that we should face boldly. We must remain steadfast with the heartbreaking fact that we will eventually lose our only son because of Duchenne Muscle Dystrophy. I know that this is also the same feeling that others have whose lives of their loved ones are threatened by conditions like cancer and Alzheimer’s disease.
Such unfortunate circumstance made the recently concluded Father’s Day more meaningful to me. While until now I continue to strive to be that ideal father, I know that I have found my purpose in life: to be a good father that Marcus needs to have whether or not that angel from heaven comes down and tells us, “You’ve passed, you will have your beloved son back.”
***
Mood: 6/10 Honks! (He told his mother that he finds it hard to wake up from bed.)
Back to School 2015
Today Marcus goes back to school. Back to where he used to be instead of the one in Batangas. This time it was us who are more anxious about him going back to school after learning about his condition this year.
The thought of him mingling with active school kids gives me and my wife that uneasy feeling. We fear that he might fall while playing or even just going in front of the class. We fear that he might get depressed if he sees other kids running around without effort while he just sit and watch them. We thought that he will have new sets of classmates as we heard that none from his previous class enrolled.
Well I was wrong. I accompanied him to school this morning and I have never been more happy to see old faces and to see them excited to see Marcus. So excited that they all transferred seats to be with him.
It is also nice to discover that the school was able to complete the construction of the new rooms. Marcus now goes to an entirely different room as a grade one pupil. So far this organization have been doing a great job. I think I could now say that this is a good start to a new school year.
***
Mood: 2/10 Honks! (Can’t wait to see how this day will end.)
Living in an Acacia for Two Days
When I was a little boy we lived in a place that has this big acacia tree. It was the landmark of that place from which we’ve heard stories about a kapre living in it who would take children who are nearby when nighttime falls. During daytime we would play under it but we have to watch out for the seasonal hairy caterpillars that could give anyone a bad itch that stays for days.
Years later I would find myself at an acacia again. This time it is taller, bigger, and a lot different from the one I used to know. This acacia neither has any hairy caterpillar dangling from it nor does it have scary folklores. It is the acacia where I would want to be at anytime. It is the Acacia Hotel Manila in Alabang.
Thanks to online promos, and wifey’s knack to find one, we once again got a good deal from dealgrocer.com that allowed us to be closed to the Lawsons who were then booked in Bellevue. The deal landed us a discounted accommodation in Acacia Hotel which I say must is one of the most strategically located hotels in the area.
On Saturday, June 6, we got a room that has something the previous ones do not have. The sparkling blue water peeking in through the wide glass window immediately got our attention. Marcus loves swimming pools so the fact that there is one right outside our room on the third floor was a welcome sight. With our bag unpacked halfway, Marcus and I were on our swimsuits in no time.
Looking down from the pool area I confirmed the hotel’s proximity to other establishments. From there the new Commercenter (that recently opened its cinemas) is a few steps away with its Yellow Cab Pizza Co. branch clearly visible. Right across on the other side of the Acacia Hotel are McDonalds and IHOP restaurants. And anyone who needs some medicines, like I did due to a nagging toothache, the Mercury drug store is just right behind the hotel. At the same area are banks that you could use especially if your account has more than enough to purchase an Audi which by the way has nearby a showroom. Another car dealership along Commerce Avenue is BMW. (I haven’t been inside any of it but I dreamt about entering one. If only dealgrocer.com offers car discounts that we can’t refuse.) The Acacia Hotel is also in the middle of two popular malls in Alabang. The Ayala Town Center is located about a kilometer away and on the opposite direction one would find the Festival Mall.
Dining at the Hotel Acacia Manila is definitely something to look forward to. The dining area is surrounded by glass windows with a high ceiling that isolate anyone from the noise of traffic outside yet at the same still get the hotel guests see the activities of the commercial district while they enjoy a romantic dinner or a sumptuous buffet breakfast.
The friendliness and service of the staff are also remarkable. Worth mentioning is the pool attendant who checked if there is something he can do to help when he saw Marcus trip in the pool during our nighttime dip. And then there’s the teamwork of the hotel receptionist and room service who made sure that they find Marcus’ Spongebob stuffed toy which we forgot to pack on our last day. You never know how your gestures made our two-day stay something that we will remember.
***
The initial plan was just for an overnight stay but we soon learned that my sister and family aren’t leaving for Bacolod on Sunday. It was a good thing that wifey found another discount through dealgrocer.com that made us avoid paying P8K plus for another day. She made the deal using the HP Envy she got from the Lawons. Thanks!!!
Incidentally, we checked out Monday, June 8, which was exactly a week after we had Marcus’ EMG/NCV session at Asian Hospital and Medical Center.
***
Mood: 3/10 Honks! (I am hoping that these inquiries about our house will translate to a sale soon.)
Marcus Can Blog 