86) J

I sat down with the intention of writing this post, but it morphed into my previous post. I’ve been thinking a lot about how I haven’t had much time to write during the month of December, and I needed to write about not writing. If that makes any sense.

Most of my worries in life the past year-and-a-half have been about E. It’s only natural to ruminate, and think about the ugly what-ifs when you have a child who is facing a life threatening illness. But I also worry about J. He’s not much of a conversationalist when it comes to talking about feelings, or anxieties, so I really wonder what he thinks about our situation. Overall, he’s a great kid. He can be affectionate, kind, empathetic, and snuggly, but he can also be quite the challenge. He’s quite stubborn, unbending, and gets overly emotional when something upsets him. Given what we’re dealing with in regard to E, neither of us have a whole lot of energy, or patience on a day-to-day basis. We try our hardest to give J a “normal” childhood, and to pay equal attention to him as we do his brother. I just want to be fair, and do right by the both of them. I don’t want J growing up to resent us because he perceives that E receives the lion’s share of the attention. Yes, E receives a lot of attention. J sees us giving E medication every day, hears us talking about E, and if we have any concerns over his temperature, how he feels, etc. These are all things directly related to the attention E gets due to his leukemia. But when I’m giving them my attention, whether it be playing, singing silly songs, doing voices, or whatever, I always make an effort to dole it out in equal does to both of them. We also try to give J special activities, where he’ll go somewhere without his brother, and we emphasize that he gets to do this, but E has to stay at home because he’s too little. There’s no instruction manual on how to raise your kids, and there’s especially none on how to raise your kids when one of them is diagnosed with cancer. All we can do is try our best, and hope that it’s enough.

December though....December brought a few worries about J to the forefront. At least for me. Early in the month, J had been complaining about pain in his knees. Around the same time, he happened to have a number of small bruises on his legs. Before we could get him in to see our family doctor, he complained that the pain was now up in his hip. He’d also seemed excessively for a couple of weeks. Of course, when you already have a child with leukemia, and your other child begins to exhibit symptoms that are common for a leukemia diagnosis, your brain tends to turn to dark thoughts. I had myself absolutely convinced that we were going to take J to the doctor, and end up at SickKids with a cancer diagnosis, just like we did with E. After a few days of trying my hardest to not worry and fret, it was time to take him in for his doctor’s appointment. Everything was fine. The knee pains were likely growing pains, and the hip pain seemed to be a pulled muscle. He’s jumping, tripping, falling, and tumbling all of the time, so that probably accounts for the small bruises on his legs, and he’s such a poor eater, so that would be the reason why he was tired.

J has made a so-so adjustment to kindergarten. Just like other kids, he has friends, and he has children that push his buttons. Unfortunately though, through a stroke of bad luck, two of the children that he had been closest with have moved away. The most recent one happened in December, and he was so upset about it. There was a multi-week span where he would ask me every day if his friend was going to come back to his class. There was upset, crying, tears. I felt so badly for him. Closer to the Christmas break, he asked my wife if we could move to a different house. I suppose that in his mind, he thinks that if we moved, he’s be reunited with his friends. My heart shattered when my wife told me that story.

J has a number of age-inappropriate behaviours, and he’s been exhibiting them in school. Often, these behaviours happen against his classmates. In a previous post, I had written about some of his classroom problems such as screaming, hitting, and occasional biting. This has been going on for quite a time, and the behaviours extend back to when he was 18 months old, and starting daycare. We’ve tried numerous approaches to get his undesirable actions under control. We’ve seen our family doctor, pediatricians, naturopathic doctors, changed his diet, sent him to play therapy, and had him tested for a diagnosis such as ADHD, or being on the autism spectrum. So far, nothing has really worked. We know he’s not on the spectrum, and he doesn’t have ADHD, but there is evidence that he has a sensory processing disorder. This would explain the outbursts when he feels that his personal space is invaded. It would explain why he loses it when he thinks that someone is chasing him. It would explain why he flips when there is a lot of noise, and why he seems to have better days when less kids are in attendance. Yes, he’s a typical boy, and yes he has boundless energy, but we feel that he’s a bit more over the top than your average four-and-a-half year old. It’s not easy on your nerves to drop him off at school day after day when you don’t know how he is going to behave. Granted, my anxieties, and patience are already stretched to the max with our family’s situation having a child being treated for leukemia. J is a smart boy, often doing work that is above his grade level, and I want him to be successful. Not just academically though, I want him to be able to have deep, meaningful friendships. I don’t want him to be shunned by his peers, and I don’t want people to think he’s just a “bad” kid. He can be incredibly difficult & stubborn, and he’s made being a father much more challenging than I had ever imagined it to be. I’m not a parent who thinks of my children as little angels who can do no wrong. J has his faults; so do I. So does everyone in fact. He can frustrate me, he can stress me out, but he can surprise me too. I may not always like how he acts, but I love him with all of my heart.

J’s occupational therapist (OT), has a plan going forward to help him manage his behaviours, and to try to stop them before they spiral out of control. J’s teacher, early childhood educator, and school staff are all great people. They’re in his corner, they’re supportive, and they’re implementing the recommendations of the OT so that he may have a rewarding JK year. And finally, we have some reason for optimism, since he had a great first week back after the Christmas break.