Legos block Shell’s Arctic drilling. (Image from The Guardian)
It’s not entirely true though for our son.
Well, naughty or nice, Marcus got one this December from Santa Claus. It’s from the Santa Claus who bought the stuffs last year and waited for the right moment when he runs out of idea on what to give next. And it happened.
Yesterday, Santa skipped our home, or didn’t get the opportunity to sneak his way to Marcus’ red sock, so this morning he makes up for it with an F12 Berlinetta.
A Lambo from Petron, a Ferrari from Shell.
I don’t know if Santa still has more left but I heard Mrs. Claus said there’s one more. Let’s see what Marcus gets in the next days.
***
There is good news. Shell Corp. eventually pulled out its Arctic drilling activities after realizing there is no long term potential in the area or probably after encountering radical Santa’s elves who got annoyed by the noise and threatened a lifetime of zero gifts for the sons and daughters of all Shell employees. Now we wonder if we will soon see the return of Lego-Shell partnership. Make the answer ‘yes’ please.
Happening again in 2016?
***
Mood: 2/10 Honks! (The building game begins tomorrow. This isn’t Minecraft this time but it could like a villager’s house.)
The two front teeth had to go. At the age of seven, Marcus’ set of teeth had been all strong, almost perfect, with no sign of degrading until one day my wife found one new tooth coming out behind his upper front teeth. So yesterday, the two front milk teeth finally got extracted to let the new one take its normal place.
Just like his first trip to the same dentist, no tear whatsoever was shed on his first teeth extraction. Props to the pediatric dentist who took time to explain to Marcus on what to expect during the whole process—that’s on top of our similar discussion while on our way to the dentist’s clinic inside the SM mall. It would have been a better if his cashier gave us PWD discount.
Missing teeth, yes. Charm, no.
The experience was more awkward than painful for Marcus as he wouldn’t want to be seen toothless in school. The good news, or bad news, he won’t be inside a classroom together with his classmates anymore.
It was Monday, last week of October, when he asked us if he could stop going to school. We saw it coming as we observed lately that he finds it more difficult to wake up, let alone rise on his own but we decided to wait until he tells us about it because we can see back then that he still likes being in school despite his condition. While his request made it official that there will be no more sleepy trips to school, for both of us, his teacher and the school’s principal were kind enough to allow him continue studying at home if he wants to. Last week he took his last exam and said goodbye to his classmates. Most of them cried, yes, including the boys and his teachers.
Look ma, no hands! (He was Batman last Halloween but unfortunately we arrived late and did not catch the villains, I mean, his classmates.)
With the absence of worries about grades, something easily took over his study period. Minecraft. Other than his XBox, Marcus now has his Minecraft PC. This PC version of the sandbox game is actually a whole lot better than its XBox 360 counterpart as there are free maps and mods that can be downloaded and installed. Surprisingly, in a matter of weeks since I purchased this game as a reward for his good grades in school, he can already install the mods and maps by himself. He was quick to learn to remember and type the path AppData.minecraftsaves (and mods where he can extract his mods) to install his maps. Well, it lasted until he broke the HP laptop keyboard’s S key, and X, and A, and a couple of other frequently used game keys. So just like his two front teeth, he lost his HP laptop. The latter should teach him a lesson to control his emotions, to take good care of his prized–in this case, pricey–possessions.
To be honest, parenting Marcus is now tougher. A whole lot tougher, trust me. We figured that ‘spare the rod, spoil the child’ approach is now out of the question. Disciplining him has to be done the other way and sometimes it gets frustrating. The heart and muscles of kids with DMD are sensitive and are degrading faster over time. This means that we are doing our best not to upset Marcus. We do our very best not to make him trip or fall, we don’t want him to stress nor hurt his muscles and even his heart and especially his emotions. So how do you parent a child with such condition, one whose body is frail but with a personality so strong? Sometimes I wish it’s the other way around.
If the tooth extraction went well, as if nothing happened, the recent blood extraction result was the complete opposite. While he seem able to take the pain of the pierce of a needle, we soon found out that Marcus’ dystrophin is leaking wildly relative to normal level, and it is worse than before. In April this year we were looking at 15,000 U/L and in October it has elevated to 30,000 U/L. The normal level is 150-150 units per liter (U/L). It’s that bad and the current dosage of CoQ10 and Alpha Lipoic Acid supplements seem to be of no help. If only there’s a way to patch up this one. This Christmas we all want more than just his two front teeth.
***
We just learned that our version of Mrs. Wilson is sick and in the hospital. Get well soon, from Marcus a.k.a your Dennis The Menace.
***
Mood: 3/10 Honks! (I don’t know if I should be happy to once again skip the opportunity to watch this Everyday I love You movie with wifey.)
As America observes Labor Day some people all over the world celebrate Duchenne Muscular Dystrophy (DMD) Awareness Day and I, my wife, and Marcus were among those who participated in our own simple way. Kudos to wifey, she had a perfect plan on how we should go about it which is by celebrating the day together with people whom Marcus stay with five days a week. So today, we surprised his classmates during their lunch break.
Wifey and I went to the school with our car and bag packed. We stopped by to meet up with the one who baked the cupcakes, dropped by Greenwich for the pizza, and we filled our backseat with red and white helium balloons from a small party needs store. In the trunk were our presentation materials—a YouTube video saved on a laptop and a wheelchair.
Questions were all over when we entered the classroom as everyone seems to wonder when they saw me pushing the wheelchair in—the sight of it entering the school gate made waiting parents’, yayas’, and guardians’ heads turn as well. But with most of his classmates already familiar with how Marcus behaves, I soon heard ahhs and ohs as a sign of their realization of whom the attractive red and blue wheelchair belongs to. Curiosity heightened when I made a short introduction of why we are there. Then I played BrainPOP’s animation about Duchenne Muscular Dystrophy. Everyone was all ears.
The attentive audience.
Reactions differ as the 4-minute video played. Some smiled—after recognizing the similarities of the animated character’s traits with that of Marcus—and some tried to absorb what they have just seen. Marcus’ adviser and the school’s principal were also present and even if they are the only two adults who now begin to understand more about Marcus’ condition made our efforts to spread the word about DMD all worth it.
We capped the celebration by letting the grade one class release the red and white balloons. Everyone enjoyed the celebration so we declare our first DMD awareness day as one mission accomplished.
Saying goodbye to the red and white balloons.
***
My wife and I also took the opportunity to give everyone a heads up that sooner or later Marcus will be leaving their school and most of them cannot believe it. Other kids who are also fond of Marcus were surprised about the news. Sigh.
***
Mood: 3/10 Honks! (Marcus’ 2nd time to shower in the rain.)
I am not really surprised when we slowly noticed our son’s growing dislike of being in the crowd specifically birthday parties. When we were kids my sister and I hate attending parties but we get dragged to attend anyway. Fast forward to parenthood, I now know the predicament–that invitation us parents find hard to refuse.
So yesterday Marcus and I found ourselves in the the middle of restless kids and parents who tried their best not to lose their sanity or, at the very least, their patience. It’s the 7th birthday of our neighbor’s daughter. FYI, I was able to maintain my composure. No kidding.
The party wasn’t routine though. While the McDonald’s party started slow, posing to be another SSDD, things became interesting maybe in my attempt to amuse myself in the absence of wifey who found a perfect excuse to stay behind–she finally got a new online job contract.
Firstly, drum rolls please, Marcus agreed to eat the cheese on his spaghetti. Pardon me for making it sound like it’s a science breakthrough but it it’s sort of like that. Our kid hated cheese ever since just because he thought it is only for mice–no thanks to Tom and Jerry. Yesterday was his first dare to put grated cheese in his mouth and he gave the thumbs up.
Then I would also say that he is also the reason for another unexpected turn of events. Being the only kid not joining any of the games got the emcee’s attention and so an equally stoic character beside him got picked for a game. My name was called.
To cut the story short, my team lost the game and to make matters worse we were made to dance as penalty. So there goes me do the nae nae. I will likely skip the next McDonald’s party invite.
The orientation of the party hat plus the face are tell-tale signs of his experience. This was before he witnessed me do the nae nae.
***
Thanks Elmer and April for the invitations. Your daughter’s 1st birthday party was Marcus’ first time to attend a McDonald’s party. We will try to attend her debut if we are still around.
***
Mood: 1/10 Honks! (Tatay sounds good, the house plan looks almost perfect.)
It is perfectly normal I guess for kids to show and express their influences in school. For them to see that their heroes or people or things they admire are with them while in class could lessen their anxiety or better yet inspire them to focus on their activities while seated in front their teacher. It must be the very same reason they want bags and matching pencil cases that have the images of their favorite superhero or even favorite doll. “I will be the next Ant-Man.” “I will grow as lovely as a Bratz.” We’ve been school kids before so we should understand.
Drawings would also reveal what is on their minds, what they imagine all the time. And even words they write could show what or who their influences are. Case in point is what we discovered just recently from Marcus’ Mastering Handwriting book.
The current favorite–Batman.
Ok, that’s fine. We know Batman, kids love Batman. So B for Batman is a no-brainer. Back in the days he would have written Ben 10, but he got bored of it.
How about H? Name a character whose name starts with a letter H? Can’t recall one? Hawkeye? Hellboy? Hulk? Nope. Harry Potter? Eww. Oopps, pardon my manners.
Neither Hawkeye nor Hellboy, not even Hulk made it. Hitman did.
Yes, Hitman made it on Marcus’ H list. This is despite the fact that I have already kept his Hitman Xbox CD and he never saw any of it after the first 10 minutes of that game after I learned that the Hitman is fond of pianos except that he is more interested in the use of its one wire–one wire is good enough to play his death tune. But Marcus soon heard about this character again from the trailer of the movie Hitman: Agent 47 and its cinema posters in the mall didn’t help us in hiding the character’s existence. So that writing exercise must be a subtle request to allow him to watch the movie and had it been PG13 I would have given in. However, with its R13 movie rating means that it is a lot more than just piano wires and its unconventional use. So yes, you could take a breather now, we are responsible parents after all. And for that writing entry, we have asked him to remove it. The word ‘hit’ would be good enough for now.
***
Again, no Hitman. We watched Pixels. It is his first discounted movie.
***
Mood: 4/10 Honks! (There’s a queue on the treadmill, all weights today.)
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.)
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.
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.
His first wheelchair. Picture taken inside a Healthy Options store where we bought CoQ 10.
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.
He can still dance but just briefly. (Photo taken inside SM South Mall after a trip to the nearby UPHMC.)
***
Mood: 5/10 Honks! (Off to Batangas, first time to check the lot up close.)
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.
Man and kid on a wheelchair. The side mirror is the same as mine but this is a photo from Top Gear Philippines’ FB page.
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.
DMD did not stop this guy from achieving his goal. (Photo from abs-cbnnews.com)
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. (Iread 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.
Yes, that is a wheelchair flying. (Photo from YouTube.com)
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.)
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.)
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.
New classroom, old happy faces.
***
Mood: 2/10 Honks! (Can’t wait to see how this day will end.)
Marcus Can Blog 