Frail

The afternoons are for cats. Marcus with Tiger.

There are things that are hard to deny, things that its progression can’t be stopped. Such is the case in Marcus’ condition. This week he felt pain on his right calf after I got him out of bed—this was the first time we’ve heard him complain about it. Every morning I get him out of bed, with his permission, by grabbing his feet. This gets his whole legs stretched besides the regular massage I give him. All the while we never had any issues except occasional request for him to stay few minutes more in bed. Concerned about the pain, I made sure since then that I pull him out by holding either on his upper legs or arms. I am more careful this time.

The good news is that Marcus still maintains a happy disposition. He smiles often and is even good at making anyone laugh at his antics and stories. He is a natural joker, he likes making his own impression of me and wifey and it cracks me up all the time. He would also share his amusing thoughts every now and then.

Despite stuck in his computer games almost the whole day every day, he continues to surprise us whenever he speaks up. “Mommy, I want to build a time machine,” he said to her one evening while preparing to sleep. “Why?” asked wifey. “So that I could go back to when I could still walk.” He also wishes to go as far back as the biblical times so he could talk to Jesus about getting healed just like in the stories from his first bible book.

He likes to make himself useful. He just finished placing stuffs in the fridge.

His mindset too has changed. If in the past he would have a big no for an answer to the idea of being a big brother, this time he reconsiders. With some conditions. “Mommy, I want you to adopt a baby girl. She should have the same complexion like mine,” he told wifey one night. “But I don’t want her to call me brother. I want to be called ‘hero’,” he added. On that same night he sent me a text message with the same demand. (It was a welcome relief from listening to awkward calls recordings.) That Xbox SIMS game he’s been playing is blessing and a curse—it made him embrace the idea of adoption.

Friends and relatives who know our stories would commend us for being strong parents. Well sometimes we are but sometimes we try hard to be–we need to. Marcus’ condition will continue unless technology makes significant findings to slow it down or better yet stop it for good. Whatever happens, we commit to continue to hold on to each other’s strengths so that we fill in each other’s weaknesses. We are hoping he won’t get frail any further soon.

***

WordPress updates have been a handful lately. Every time there is a new update I would encounter a new error. This time was about FileZilla blocking most files that led me to discover an alternative–WinSCP–and it works like a charm. The interface was so simple that I was able to make wifey and Marcus update the files.

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My fans, 5 or 6 of them, were having a hard time opening this blog site when using their phones but thanks to a plugin called WPtouch the site is now mobile friendly.

***

Mood: 1/10 Honks! (Exactly one more week…)

 

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A Gathering of Kids in Wheelchairs

First meeting with the DMD Moms. (Picture posted with permission.)

In a matter of one week after we joined the FB group DMD Moms the meeting happened. On Saturday, October 8, a couple of members made it to Waltermart Makiling and it probably was one of the few times, if not the only time, this Kuya J resto location witnessed a meeting of kids in wheelchairs with their moms and dads.

Since we learned about our kid’s condition more than a year ago, this our first time to come face to face with other parents who have chosen to meet the challenge head on. These are parents, moms especially, who stared at their young boys’ dystrophy straight in the eye and commit to make the lives of their kids better against all odds.

It was a surprise that Marcus was relatively behaved. Days prior to this meeting he was so anxious, he has lots of questions. He also expressed that he plans to just wave, say hi, and shut up. But he didn’t. He interacted with almost everyone, parents and kids alike. There were some awkward moments though like when he cried when he saw the cooked shrimps—he doesn’t like to learn about animals being killed and cooked but he eats fried chicken. SSShhh. He also refused to answer some questions referring to our constant reminder not to talk to strangers. After some explanations, he got along well with the others.

We hope that this isn’t the first and the last meeting. Like any other conditions, it pays to have a support group, a group who perfectly understand what the others are going through and could possibly help one way or another. At least Marcus now knows that after all he is not alone and that he could actually have friends aside from those in school and his cousins. Kudos by the way to the crew of Kuya J for being accommodating and understanding. They even honored the individual PWD cards that we presented. Facility of this branch is also great besides tables that could have been much more wheelchair-friendly.

***

Picture was taken exactly a year ago at the gym where I used to workout.

Mood: 2/10 Honks! (Wifey solved my network problem. Two heads are better than one.)

DMD Moms

It was another well-deserved Saturday morning when a notification icon on my new phone shows a red number beside it. Sooner I realized it is from the Messenger app and when I opened it there were like 5-8 messages waiting to be read. Some more than a year old already, some from people I know, others from people I choose to continue to ignore. But there’s one that caught my attention the most. It was from someone I had a chat with more than a month ago using our laptop, she invited me to join their Facebook group. I would normally shy away from such invites but this time I eagerly agreed.

It was DMD Moms. As the name implies, the group is mostly composed of moms of kids with DMD just like Marcus. This is our second online contact with others who have the same case as we do. The first one was Muscle Dystrophy Philippines but DMD Moms seems more personal and active–one you would expect when you gather a group of chatty moms. That same day, I informed wifey about it and in no time she joined the group as well.

While being the latest members of the group, it didn’t take long before we see familiar stories. Stories of despair, stories of strength, stories of hope, stories of love and commitment. According to the one who invited me, the group has currently less than 30 members, us included. We also learned that some are located close to where we live so a meeting could soon happen and when it does, it would be the first time Marcus would meet someone who also has DMD. We are looking forward to it.

***

For the second time, I got a new phone courtesy of wifey. While I’m waiting for the MyPhone store to replenish its Rio batteries, wifey had secretly ordered something from Lazada. So here’s me with a new Flash Plus 2 which is more than enough to run my Kindle. Well, it made me discover the benefits of the Facebook  and Messenger apps. Oh, I tried some selfie while alone at work but camera didn’t make me look good. I wonder if there’s like Photoshop or the popular beautify setting like what most of my Facebook friends use. You’ll know when I found it. Out of the box, it’s a good phone so far.

***

Mood: 3/10 Honks! (Pain on my right back is almost gone.)

How Do You Explain Anger

At a very young age, kids do start to feel and experience a lot of emotions, anger included. When present within their environment, anger could be absorbed by their very innocent minds and it starts to build up ready to be expressed when the right time comes. This we learned recently.

Days after our car got rear-ended by a motorcycle, Marcus asked his mother, “Mommy, why does daddy get angry when driving?” I didn’t ask my wife whether our son used the adverb ‘sometimes’ or ‘always’ to describe the frequency but the news struck me—and I seem to know the answer anyway.  Marcus who has been allowed on the front passenger seat since he turned seven was not only there to enjoy the view but was after all observing my emotions as well.  Driving must be making people angry so for this same reason he does not want to drive in the future anymore.

I have not offered an explanation to our son since I heard about his observation and conclusion regarding my bad driving habit. However, I all of a sudden have my late New Year resolution declared within me that I should start changing how I drive—at the very least, when he is around—so I could convince him back that driving could be a pleasant experience. If he could actually drive soon is another matter.

“Daddy, I won’t be able to drive.” I heard him say when I allowed him one day to sit on his own on the driver seat while parked. “I still have short legs, can’t reach the pedals yet,” he added. I smiled and said, “Not now, but soon.” I was suppressing sadness, I was telling him a lie.

Driving will be the least of his worries when Marcus gets older. His dystrophy is taking its toll on his mobility and what was once a simple task of standing and staying still is presently becoming more of a challenge. I can see his frustrations often. Last night, I heard his sentiment myself.

“I am angry at God.” A statement he once told his mother, he said it again immediately after we had our regular night prayer. Like a shot of espresso, such short yet strong statement got me back on my senses away from a progressing sleepy state. Time seems to go slow as my mind processes what it heard while at the same tries to recall every plausible explanation it could get from what I learned in Catholic school and from the homilies in the masses I have attended. How on earth am I going to explain and defend God to this child who regularly prays before he goes to bed?

Well my wife and I had something. That God has plans for everyone and everything happens for a reason. That to feel angry at his present condition is perfectly normal but he must understand and keep his faith that God does look after him.  It does sound cliché but it was the most rational we can muster at that very moment. We hope that as Marcus grows up and continues to have more questions in life we also strengthen our faith so that when we will have better and convincing answers. Answers that are real, answers that we know aren’t lies.

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No pictures for now, will not waste time waiting for Photobucket to load. We’re getting a passport of Marcus.

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Mood: 2/10 Honks! (Heading to DFA Alabang)

Our First DMD Awareness Day

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.

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Mood: 3/10 Honks! (Marcus’ 2nd time to shower in the rain.)

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.)

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 Mood: 5/10 Honks! (Off to Batangas, first time to check the lot up close.)

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.”

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Mood: 6/10 Honks! (He told his mother that he finds it hard to wake up from bed.)