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  • He is very quiet and withdrawn, and prefers to be by himself.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.

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.)

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.

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. (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
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.)

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.

New classroom, old happy faces.

 

***

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.

The acacia sans the hairy caterpillars.

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.

Because Spongebob is a stuffed toy so he got Batman in the pool instead.

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.

Night at Acacia Hotel Manila
Busy night traffic shot from the pool area.

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.

Breakfast at Acacia Hotel Manila
Buffet breakfasts never fail to make us smile

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 breezy pool area did not stop us from taking a night dip.

***

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.)

At The Other End Of The Line

Newbie outbound agent’s life.

 

Who says D) All of the above?

 

 

***

I am among those who like posters and typography. I love looking at menu artworks especially that of Starbucks which is one way of being seen in front of the store without having to spend a cent. I am also interested in corporate photography that are used in slide presentations–usually compensates for boring lectures. All these, however, require tools to accomplish which is the reason my ideas remain inside my head. I can’t buy the software, I can’t buy the camera.

Fortunately, I finally found time to check out Canva.com which offers an online tool for anyone who has a poster idea. The website has a range of layouts and a number of typefaces to go along with each design. The poster above is my first creation using its free service. I need a back office job.

***

Mood: 3/10 Honks! (Next stop, find a tarpaulin to place the house on sale.)

Parenting A Kid With A Condition

“Love beyond your comfort zone.” – Homily, LaSalette priest

Any mother or father will likely agree that parenting is the toughest job ever. Man can control machines he designed. Man can control—not to mention fire—people he hired. Man can manage the business he started. Name it, man has learned to place controls on almost anything except probably nature and kids (and if I may add, the Philippines’ railway system). So far there isn’t an exact parenting blueprint that applies to all.

Parenting is and will always remain relatively tough. Technology can only do so much to aid any parent in controlling kids. Come to think of it, technology may have even added to the challenge of parental control. Show me an app that is proven to improve parenting and I promise to thank you later.

Then there’s that other factor.

If parenting a normal or an average child is already tough, more so being a mother or father of someone with a condition. The dilemma to discipline or to cut the child some slack comes into the picture.

This is how we now feel with Marcus. I consider myself a disciplinarian and my wife knows that I wouldn’t pass on an opportunity to lecture our kid. However, with us discovering that he has DMD made me step back. It makes me wonder though if such is a good idea after all. Marcus now spends longer time with his gadgets and games. He is not forced to wake up early. He is not required to run around to exercise. We stopped playing football in our yard. We even have to forget–completely–about biking around the village.  In short, lesser physical activities to avoid getting him stressed out.

Chances are all these changes surprised him but I fear that it also spoiled him more because everything is now on his favor, under his own terms. I realize that this is where things could start to go wrong in the long run. So however hard it may seem, I can’t allow it to happen. A balance must be established back in some way.

How we should strike a balanced parenting with his condition factored in is something we are still trying to figure out. I believe that appropriate parenting should continue so that when that time comes we have already built a good foundation where our future relationship depends.

For now we continue to treat him as a normal kid as much as we can. While we can see that he is starting to wonder why he is not as agile as most kids do, we haven’t told him everything yet. He is still a kid who is restless, one who likes to move around whenever he feels like doing so. We can only advise but we do not suppress movement as long as we see that it won’t tire him out and make him fall uncontrollably.

Pepperoni is mine. (Photo taken by wifey @ Shakey’s)

***

“Serious ka na naman! (You look serious again!)” is Marcus’ new statement. First heard it after he caught me too focused on our Call of Duty game.

***

Mood: 3/10 Honks! (When you listen, you learn.)

Saturdays with Needles

It has been a week since I got inked for the very first time and as most people who do it, there is an inspiration behind each tattoo. Mine comes from Marcus and one of his favorite games, Minecraft.

That’s Minecraft’s Steve on my left chest.

The tattoo shop’s size and ambiance were not close to those of Miami Ink–a show that wifey and I used to watch back when we still have cable TV. However, I know that the experience I felt that day was the same as anyone who had their tattoo for the first time. It was a mixture of pain, excitement, and the dilemma if I could still back out and say “forget it.”

Same cannot be told of Marcus’ day with a different needle. Today, we finally accomplished his first test–among several ordered by his doctor–that requires blood extraction for CKMM which is a procedure that will determine the extent of damage to his muscles. Watching him cry was painful but what breaks my heart more was his question after the extraction, “Daddy, would I be able to jump soon?” Result comes out this Monday.

Marcus with Yaya (known to others as Frankenbob) thru good times and bad times. There’s my next tattoo idea.

***

Mood: 5/10 Honks! (Still wondering why him.)