88) A to zed

I’ve previously written about E, his speech, and how I think he’s a bit language delayed because of his chemotherapy. I realize that every child develops at their own pace, but he will be 3 in April, and he’s barely making 2 word sentences. Funnily enough, I did hear him speak 3 words the other day: he was struggling to remove the cap from a Crayola marker, so I helped him with it. When I took the marker out of his hands, he very distinctly uttered “Hey, that’s mine!”. I laughed, and laughed.

Most of his speech is still one word sentences, with some two word sentences thrown in. He’ll say “help” when there’s something he wants that’s out of reach, or if he wants out of his high chair. Often, he’ll get our attention by yelling “Da da da da da!”, or “Ma ma ma ma ma!” followed by the name of the thing he’s trying to get us to notice. Sometimes we’ll understand what he’s saying, other times not so much. In fact, he has a good vocabulary, he’s just not putting words together as much as I thought he would by this point. He babbles quite a bit, and maybe it makes sense to him, but I’m not hearing a whole lot of coherent words. The funny thing though, is he understands most of what we say to him. We can ask him to grab a specific stuffed animal, and he’ll pick out the correct one. We can ask him to find the red marker, and he’ll find the red marker. He can be pitching a fit when I’m trying to put him in his highchair and I’ll say “settle down, let me put you in your seat, and you can have a cookie”. Then he settles, and he gets a cookie once he’s harnessed in. Observing the struggles, and successes of his development is intriguing, and fascinating.

Delayed speech doesn’t mean stunted intelligence, and I know he’s a smart little guy. He has strength in areas other than language at the moment. Before Christmas, he became obsessed with numbers. If he was watching YouTube, it had to be numbers, if he was playing with toys, the toys would have numbers on them, or something to do with counting. At the supermarket, he could look at the signs and tell me what aisle number we were in. He can count to ten 100% of the time, and he knows most of the numbers from 11 – 20, he just doesn’t count them in order yet. Using flash cards, he can correctly identify everything up to 20.

Around Christmastime, and after, he became interested in the alphabet. He doesn’t pronounce all of the names of the letters properly, but he can mostly sing the alphabet song. He’ll miss a few letters here and there, but he’s got the tune, and most of the alphabet. Testing him with flash cards, he can correctly identify 90% of the letters. He has problems with P, Q, and I think one other letter. He grabs learning books meant for older kids, opens them, flips through the pages, and (correctly) points out random letters to us.

It’s quite amazing for me to watch him as he learns to recognize, identify, and repeat the names of our Arabic numerals, and Roman alphabet.

87) December rollup

The Christmas Tree came down tonight, January 18^th. That’s the latest ever. My wife’s family is Italian, and by tradition, the tree stays up until January 6^th, which is Epiphany. It comes down after that, but we were delayed this year due to lots of little things, and for no main reason. I joked to my wife about redecorating it with hearts for Valentine’s Day, but no dice. Both of the boys “helped” with the un-decorating, and we even managed to get everything done before the evening devolved into J and E fighting with each-other over who got to sit in the tree box.

December was an okay month. This year didn’t overly feel like Christmas to me, but I think that is because we didn’t have any snow in the GTA. Since the snow wasn’t here for Christmas, it can just f*ck off for the rest of the winter for all I care. Last year, we had a hospital stay from the 20^th to the 26^th, but this year, E had no fevers, so we were at least at home. We didn’t completely manage to avoid the sicks, with J catching a cough/fever/sore throat on the first day of Christmas Break. By December 27^th, my wife had it too, but she had the additional symptom of an ear infection. There was a day or two the E was flirting with a fever, but his temperature never reached the threshold where we would have had to bring him in. With half of the house under the weather, we were a bit more isolated, and stir-crazy than we would have like to, but at least we were at home.

By way of the calendar, E’s lumbar puncture (LP) fell on the 26^th of December, but it was bumped ahead by a week to the 19^th, because the cancer day clinic is not open on Boxing Day. We ended up needing to reschedule E’s LP o the 18^th, because the 19^th turned out to be J’s first Christmas Concert, and we did not want to miss that. My mom was out to get J off ot school in the morning, so that we could leave early. The procedure was pretty standard, we carried him in, we snuggled him while they anaesthetized him, we put him down on the stretcher, and left to wait the 10 or 15 minutes that the LP usually takes. He slept approximately the usual amount of time, waking up with about 15 or 20 minutes to go before he was allowed to sit up. Also in December, E was bumped up from 5 weekly methotrexate pills to 6 weekly methotrexate pills.

Steroid week with dexamethasone started the evening of the 18^th, when we returned from SickKids. It ran until the morning of the 23^rd, and it was a bit of a different steroid month. The first couple of days, E was extra emotional, and was crying, or whining. We were concerned because the moodiness usually doesn’t hit him that quickly. Then, it disappeared, but it was replaced with sleeplessness. He did not want to sleep. He’d have problems falling asleep, and he’d immediately wake up if you tried to move him, even when he was in a deep sleep. If we did manage to get him down in his own bed, he wouldn’t be in there for long. He’d wake and cry, so he’d end up being brought in to our bed where he’d have an unquiet rest of the night with plenty of tossing and turning. His sleeping has improved since then, and he receives melatonin drops about an hour before bed, but he still wakes between 12AM – 1AM and ends up sleeping with us.

Jumping further back, to December 9^th, my parents came out for a visit so we could go out and get a little break. We went out for a quick bite of lunch, and the plan after was to check out the mall to finish up some Christmas shopping. While parking at the mall, the shifter cable on my wife’s car snapped, the car was stuck in neutral, and the shift lock was engaged so we couldn’t even move the shifter. Being a Sunday, the dealership was closed, so we had the car towed out of the busy mall parking lot to a garage to be fixed. I found out afterward that there was a recall on the car because of this problem of the shifter cable detaching from the transmission.

In my family, December is not only a busy time because of the build up to Christmas, but we also have 2 nephews with December birthdays. We have 2 other nephews with January birthdays as well, so there is plenty going on for those two months. We wanted to give an experience present this year, so in addition to giving a smallish toy, we took 3 cousins, as well as J, E, and a big vat of hand sanitizer to the Ontario Science Centre. We maybe weren’t thinking clearly because 5 boys with ages 2, 2, 4, 5, and 7 was a whole lot of crazy and chaos. Overall, they had fun, and us parents didn’t lose our minds too much. I didn’t live physically close to my cousins growing up, and I only got to see them every few years. I’m lucky that we’re just a short car ride away from cousins on both sides of the family, and it makes me happy to see my boys have the opportunity visit, play, dance, fight, and eat with their cousins on a regular basis.

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.

85) On the passage of time, blog neglect, and perfectionism

2019. How did we get this far into the future? I remember the 90’s lasting for ever, but now it seems like time is accelerating. Maybe this is a side-effect of getting older. When you’re young, you take things as they come. When you’re an adult, you’re consciously thinking about the future. What’s next? When are my bills due? When is my next vacation? When is the next statutory holiday? You set all of these lampposts ahead of yourself to plan out your life, and the lives of your family. Perhaps because of this, you’re not as concerned about the monotonous days in between. You’re looking ahead to the next “thing” in your life that’s not a wake-shower-commute-work-commute-eat-put the kids to bed-pass out from exhaustion routine.

It’s January, and I feel like I’ve neglected this blog for too long. The last time I really wrote something of substance was in November. Last month, I wrote a compilation post of some things that happened in November that I hadn’t had a chance to write about, but I haven’t written about December at all. I know a few things that I wanted to put down, but others are ideas in the wind because I didn’t write, nor did I make an outline of what I wanted to write.

Those who know me well recognize that one of my personality traits is perfectionism. It’s a blessing, and a curse, but mostly a curse. I build things up, and want them to be a certain way, and I’m upset or disappointed if they fail to reach my own lofty expectations. For the most part, all of my writing for this space is “off the cuff” in terms of that I think of an idea about which I want to write, and I sit down and write it. No rough drafts, no extreme polishing, just words. I feel that it’s good to challenge myself to form something concrete, and put it “out there”, even though it may not be perfect. But I do struggle when I’ve lost an idea, or don’t recall details. I’ve been consistent with updating this space, but now I feel guilty about having lost some thoughts or specifics about December 2018. There’s now a bit of a hole in our story, and I’m not going to recall everything, but I’m going to try to fill in the gaps, and get caught up.