Marcus attending a neighbor’s birthday party.
Just saw this one on Facebook and it made me sad yet at the same time happy that such campaign to let everyone know how a simple gesture could go a long way. This is something any parent with a kid in a wheelchair would appreciate big time.
Also on Facebook, Lad Bible posted a video of a guy in a wheelchair doing dips in a gym. Looking at the weight he has to deal with is like me and Marcus combined. Dips has been one of my favorite routines since I started working out. I still do a variation of it at home and Marcus’ therapy session also includes same exercise though assisted by physical therapists. He just finished his second day today.
Mood: 2/10 Honks! (Crazy schedule this week.)
I can see weights. I can see treadmill. All familiar equipment so it must be a gym yet not. And as much as I’d like to I’m not returning to working out in the gym either. We are in the place that is going to be Marcus’ regular hang out for a month at the very least. It’s St. Cabrini’s rehab center. Our first time here, our first time to have him undergo physical therapy.
Our expectations are high but realistic. We hope the next sessions would improve his movements and allow him to be more independent. So that he could sit up on his own coming from bed in the morning. So he could sit straight longer. So he could extend his leg even while in a sitting position. All the basics that we tend to ignore but a struggle to kids like him.
Mood: 2/10 Honks! (Sleepy but this is worth it.)
We finally made our first trip to see a physical therapist for Marcus but it wasn’t successful. The doctor who was supposed to check him already left as there were only few patients yesterday and so only the staff at the front desk of St. Cabrini rehab accommodated us. Upon showing the other doctor’s referral to the person in charge I realized the guy seems familiar with DMD when he started asking if Marcus has other brothers or nephews who could possibly be affected with the same condition. Not wanting to be heard by Marcus I typed something on my MS Word app and showed it to him. He smiled and acknowledged. This is one of those awkward moments when we are asked at hospitals during screening or interview. While Marcus already knows, that particular anxiety still remains in us when such question comes around. Thanks to my recently downloaded app I now have an instant flash card for moments like this.
But he does really know. That same afternoon, we dropped by the supermarket before going home and we left his mom at the grocery while we window shop at the furniture store. Passing few beds later he asked, “Why was I alone inside the tummy? Why are others two? How many can fit in there?” These are same questions he would regularly ask and as expected the one followed: “Can we adopt another?” He’s been asking for one since then. Maybe we’ll foster soon but at this time, however we’d like to, it is not a priority.
This weekend is the celebration of Adoption Consciousness Week. More power to all adoptive parents who believe that family goes beyond blood.
Mood: 2/10 Honks! (Skipped running to let my left leg recover but covered almost the same distance taking a morning stroll with Marcus. Not bad.)
I love Mondays. I also try to be honest. Kidding aside, other than the fact that Monday is the very day that spoils the weekend, my sentiment about this most hated day is just influenced mostly by the fact that everyone, if not all, feels the same thing. The hatred is that contagious. Even a cat shares the same disgust. Ask Garfield. But frankly I never had my own Monday that I truly despise forever.
Last Monday, however, seems to have made its stamp. It was like all Mondays ganged up on me so much so that the experience would like stay imprinted for a while in my brain. And in my nose. That day I summoned every positivity I had but that Monday almost overpowered all of it. Yet all is not lost. At least I realized that when push comes to shove and when hell breaks loose I could after all arise and face the challenge. However stinky I might be. (Take the hints.)
Seven days later, the cycle starts again. I still have few hours left at home before I could say that everything is all clear. That I won’t get stuck in one place face to face with the unknown and the unseen but one that can be definitely smelled. Well, I guess it won’t happen. I pray it won’t happen. Marcus has been eating enough fruits this week so it is highly unlikely that that sh*t would happen again. But then there’s work and that is another Monday story. Well, hopefully something that could make me say I love Mondays.
Mood: 3/10 Honks! (This flavored lambanog tastes sweet.)
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.
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.
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…)
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.
Mood: 2/10 Honks! (Wifey solved my network problem. Two heads are better than one.)