PART IV: Monkeyman

So the last blog entry I made in 2016, was basically about Monkeyman's final diagnoses. SSS. Sick sinus syndrome. The enlarged adenoids that was only found and removed age 5, caused the heart to enlarge, as well as pulmonary hypertension. With time, the heart and pulmonary arteries shrank back to almost normal size, but it all left his heart damaged. Particularly the sinus node. This causes bouts of tachy- and bradychardia all throughout every day (heart beating way too fast and dangerously slow). This causes the severe tiredness and the sudden paleness that was witnessed by several doctors. There's no medication that can help, since medication either reduces tachychardia or fasten the heart rate. Thus, in his case, it would be useless or even dangerous, as the medication cannot distinguish when it needs to slow down the heart or cause it to speed up. Obviously, giving a too fast heart meds that cause it to speed up, is extremely irresponsible, and vice versa.

So no medication, no operation, nothing really can help him at this point..The only “cure” is a pacemaker, which they want to stave off until it's absolutely necessary to keep him alive, since it comes with many drawbacks, especially for a child. It can even worsen his condition and cut his life thus shorter quicker. They just don't know, since this condition almost exclusively only happens in people age 70+. Not young children. So data is scarce and they tend to err on the cautious side.

So our only solution ended up being to keep Monkeyman comfortable until he worsens. When he was grade 1, he started at the new private school we moved his siblings to. He absolutely LOVED it. He adored his teachers, the new curriculum, the smaller school and made lots of friends.

Unfortunately, by grade 3, he was worsening slightly. I was scared about grade 4, as it's a taxing year in our country, with exams and added workload. His grade 3 teacher told me how he truly suffered in school. Turning pale, having to lie down regularly, not coping with the work, etc. His intelligence and will carried him through, but both me and she knew it was just a question of time. She was exceptionally good. A good person, good mother and a good teacher. And even though she had terrible things happening in her personal life, she still was always there for my son, kept an eye on him, and supported him. But what I appreciated most about her, was her honesty. She didn't minimise it, and told us straight out that this child will not complete his formal schooling. He just cannot physically do it. She supported him (and me!) throughout the year, to preserve his energy but still get the best education he could for that year.

Unfortunately, during grade 4, it became clear. He couldn't keep up any longer. It became so bad that we had to end all after school activities. We did the bare minimum of homework, etc. Still, it was too much. He turned into a zombie. Waking up tired. Coming home tired. Lying down all day and evening. Then rinse and repeat. That's not life.

This all happened the same year that from April, Boeboe was bullied and from September, ended up staying at home. Thus I realised.... again, God is showing us the way. I fought it as long as I could, but it was clear what I had to do. So I pulled Monkeyman from school too. We let him finish the year though, which ended beginning December, and from 2019, he too homeschooled.

Like I mentioned, we first unschooled. I let his body rest and recover for a whole year, doing minimal formal schooling. Like I explained under Boeboe's recap. This changed him from a barely functioning little boy into an almost-normal boy. He regained his mischievous nature that got lost along the way. He was smiling again. Asking to play with a ball outside or cops and robbers with his little sister. He was interested again in different hobbies and didn't complain if we had to go somewhere, like visiting family. He enjoyed it again. Taking him out was the right decision, that was very very clear. Even though he did miss his friends tremendously, as well as his teachers.

During 2020 and 2021, we caught up and finished Grade 6 and 7's work with Monkeyman, to complete his primary education. He received top marks, so I'm very proud. In 2022, we started him on the Cambridge education his brother also did. Six of his subjects is through an amazing online school, and the others I teach him. He's doing so well, that we can push all the work into 4 days, only some hours every day. So he gets to sleep late, then work for a while with a break in between to have lunch and a rest. Then he complete the day's work and gets to play computer games or read or watch video's or whatever. He socialise with people online, as well as little bits outside the house. But mostly, he just sits somewhere, doing his thing. Which suits his body well.

With this approach, we were able to stabilise and even improve on the function he had in grade 3 and 4. He looks good, his heart is handling it all well, and he's academically fine. On par and excelling. I'm amazed how God lead us to what Monkeyman needed, at the moment he needed it.

So today Monkeyman is a 15-year old, almost-normal teenage boy. He's mature for his age, he's empathetic, sensitive, loyal, intelligent, with a sharp wit and humour, he's competent, somewhat competitive, but mostly calm, peaceful and sweet. He loves his life. We gave him the option to start with a normal high school, or the same high school his brother went to, or online from home like now. He chose the latter as he just did not want to suffer through school again. It was really, really hard on him, the last year in school, he still remembers it. And he remembers it as being lonely, because he was too tired to join in anything any more, even playing at break time, PT periods, sports, fun-days, etc. Always sitting on the sidelines, watching. So he prefers being at home, though I do see a longing to have a closer friend his age. So I'll see what we can do about that.

Next up, our last little one here!