June 2011 marked a new beginning for me as a father, at least in some ways. It was somewhere around then that I realized that things had changed, and it was so gradual, I hadn’t even realized it. I had gone from being terrified at times, wondering “Is he going to live?” to a more nagging worry of “what kind of quality of life will he have”. This is the year, spoiler alert (!), that I transitioned to more “I think he’ll figure it out”. I hadn’t quite reached that point, but this was the year when the transition happened for me as a dad.

Not that the previous worry was “wasted”, as some people like to claim with superficial comments. Worrying about your kids in these situations is not a waste, it ensures you are thinking about options, considerations, asking the right questions. It is no more a waste than having had fire insurance and not having had a fire. Hardly “wasted” money. Worrying about some of these things was the insurance to make sure we were doing the right things to help, even if most of the final success rested with Jacob.

As June kicked off, Jacob still struggled with colds after his birthday, and lost his voice for awhile, but nothing serious. Enough for us to perhaps monitor him a little more closely for a few days, but nothing unusual for a kid. He loved the water table he got for his birthday, enjoyed the swing at Nan’s place, and was obsessed with getting up early for a couple of months (5:00 a.m.). And he was going for physical and occupational therapy every two weeks. To help out at home, we got him the same desk and chair they had at the clinic. Again, when it came up as a “tentative” option of something he might like at home as it was somewhat more tailored to his range of motion than a simple desk, the OT and PT seemed extremely hesitant to even suggest it because of course there was a cost with it. Local volunteers donate their time, but there are some material costs, etc., so it was something like $100 for each one. If I was willing in the first year to fly Jacob to Japan for his eyes, I think I was ready to shell out a couple of hundred dollars for him to have a desk and chair that fit him better than the average ones.

Come July, we were starting to turn our attention to summer holidays and trying to expose Jacob to the cottage. I still remember his progression at the cottage…he went on his first boat ride of the year, and he wasn’t quite sure. For the second ride, he thought it might be okay. On the third ride, he was looking around, checking out bigger boats, laughing at the bumpy ride, and then falling asleep. By the fourth ride, he was ready to push Poppa out the way so he could drive! And then when we came home, he wouldn’t stop talking about “Poppa’s boat”. Well, at least he was when he wasn’t trying out his new phrase, “Oh, shoot” or dancing to the Hokey Pokey. Jacob was still resisting some food, including ice cream, but again that “obstacle” fell by the wayside when Mom had a Midnight Truffle Blizzard, cuz then all bets were off.

We were also dealing with trips to two separate pediatric ophthalmologists. The first was at CHEO and was generally awesome. Even considering that a PO is a specialist, our trips to CHEO could last up to two hours on a bad visit, depending in part if Jacob needed to have drops in his eyes or not for the visit. Not fantastic, but not egregious. But we also had to see a private PO in order to more regularly monitor J’s progression as well as to fit him with glasses and contact lenses. These visits were, well, how can I put this? Frustrating, annoying, long, boring, etc.

Like many private specialists, they use block booking i.e. they book multiple patients at the same time so there is no chance of a lag while waiting for a patient to arrive. You’re there, they see you when they see you, and if you’re lucky, you’re early in the call-up, or if not, you might as well get comfortable. Visits to this PO could run up to 3 hours. Separate from time off work, and the hassle of getting there, we were stuck there for 3 hours in order to spend 10-15 minutes with the PO. There were signs all over the office saying that of course the PO would spend as much time as each child needed, etc., reassuring you as to their caring nature, but it was a crock of crap. It was the business model they use to ensure maximum billing, with no slippage if there’s cancellation, and as a result, we would wait. And wait. And wait.

On top of it, the guy is the only private PO in Ottawa, and well, he comes with a reputation. If J wasn’t able to be seen by the CHEO doc, I wouldn’t have let the private guy do the surgery. I would have gone to Montreal or Kingston or Toronto or Vancouver if need be. I hated the visits, but as someone in the business pointed out, “He’s the only game in town.” He didn’t have the best bedside manner, but was nothing compared to his wife who worked as his office manager. Yet, knowing all of this, we still had to deal with him at the time for the fittings. Most optometrists won’t touch a child under 18 months, and the vast majority don’t like under age 3. The saving consolation was that J’s needs weren’t acute and so using this PO for fittings was a temporary acceptable reality. And J always was REALLY good when we there; his patience has always been better than mine. Although, in fairness, Andrea did some of the appointments by herself. And sent me cute videos of J hanging out waiting. Plus, equally in fairness, we never had a REALLY bad experience for what we needed.

August was a huge month with Jacob, and none of the “milestones” were ones that would show up on a pediatrician’s chart. First and foremost, we had a unique experience with Jacob while out at a store. One of his daycare friends was there, and so he saw someone he normally sees only in the day. I’m sure you read that and thought, “So what?”. The significance is that we didn’t really know the kid, and likely wouldn’t have recognized her in the store. Or her parents. But they knew Jacob. Jacob had gotten old enough to have experiences on his own now, experiences during the day that we were not a part of, and in this case, he knew people that we ourselves didn’t know. That is a very weird feeling, that for the first time we realized that he had this whole life apart from us after so many months where we were his whole life. Definitely a milestone, and definitely a weird feeling as a parent (for both Andrea and I).

The second big milestone, of sorts, was that we bought a new house. Again, not a normal milestone for a kid, but the idea that we would soon be moving from one house that was the whole world that he knew as “home” to a new “home” that he visited only a couple of times. Sure, we said, “What do you think Jacob? Could we live here, do you think you would like that?” but it wasn’t like he really understood the ramifications of what we were saying. He seemed to like the house at least, that was a bonus, but I had read of some kids having a difficult time adjusting to a new house and reverting back to younger behaviour, being more clingy, etc. Nothing that would stop us from moving to a new house, per se, but just a factor to be aware of in our selection. In addition, Andrea and I had different considerations for the house…for me, I wanted to be “out of the basement” with my office for example, and I really wanted the bedrooms off the main floor. For Andrea, it was more about moving the bedrooms to a second floor and having a first floor playroom next to the kitchen. In retrospect, Andrea’s wishes were the far more important ones, as the playroom was the perfect setting for Jacob once we moved in. I totally underestimated its value, which is not surprising as I hadn’t spent as much time at home with Jacob during the day as Andrea had during her leave from work. It didn’t hurt either that the location was closer to our daycare.

The third and final “big” milestone was a graduation of sorts. Jacob had been using a booster seat and a high chair in alternating fashion, depending mostly on setup, location, etc. But we left the booster chair in Peterborough one week, and it was the week that Jacob decided “no more high chair”. When he couldn’t use his non-existent booster seat, he had a meltdown, but for me, it was more about “holy crap, he’s definitely not a baby anymore.”

In the meantime, we went for a walk out in the west-end by the river to see the lighthouse, Jacob started getting into Dora the Explorer a bit more, and Mom? Well, Mom rolled down a grassy hill with Jacob. When you gotta play, you gotta play! Yet sometimes during playtime, we would have weird moments of extremes. On the one hand, Jacob was still lining up his toys at home along lines and cracks on the floor tiles. Not so much playing, just lining things up. Obsessively. Not unlike some activities of kids who are on the autism spectrum. Not enough to cause giant worry, just the occasional nagging itch to ask the pediatrician about when J had an appointment. Which we eventually did, partly as he was doing it in her office too while we talked, and she was like, “Does he do that often?”. In the end, it was just something to monitor a little. And then on the other end of the experience, Jacob would have a totally spontaneous reaction to something to show his own little personality emerging…like Mom rolling a ball to him, and Jacob mimicking her earlier phrases with “Good shot, Mommy!” Little developments of the mind and communication skills that would be a tiny leap forward, showing how his mind worked, absorbed, learned. Heady stuff at times.

I mentioned that we reached the milestone of buying a new house the previous month, although technically it was just choosing the house. We didn’t get the keys until the end of September, but Jacob seemed to feed off our energy. On the night we got the keys, Jacob kept talking about our “new house”, even though we hadn’t talked about it that much with him. Our little sponge, I guess. Of course, he seemed equally excited that month about Dairy Queen too, and celebrating Mom’s birthday, so who knows?

The big event of October was of course the actual move to the new house. Sure, we did a trip to Wakefield to show Jacob the fall colours, and we took him on a cruise on the Rideau River, but neither were particularly exciting for him. He was all about the move. As exciting as the new house was, the move was not without some thoughts too of what we were leaving behind. This was the house we bought together. The house we had our “pre-marriage” party in. The house we brought Jacob home to from the hospital. The floors he played on, the stone fireplace he kept trying to crawl over to so much that we had to create “bumpers” around the hearth. The nursery we created for him. That loss was no more apparent than seeing him doing things at the house, things he did regularly, but now potentially for the last time. Not the huge things, but the little things. Like playing at the front door. Obsessively opening and closing drawers that held our pots and pans or our tupperware. Crawling down the hall that we had first “chased” him down as he was learning to crawl.

Sure, we would create new memories at the new house. Of course we would. Like Hallowe’en at the new house while we were still surrounded by boxes. And there was Jacob. Still able to wear his panda costume from Vivian.

The funny thing about the big move was that Jacob handled it easily. He loved exploring the new house, he loved the stairs, he loved the various closets. About the only thing that traumatized him the whole time was the night before we left the old house, we dismantled all the beds and just slept on the mattresses on the floor, so Jacob thought all the beds were “broken”. He was quite relieved to have them all back together at the new house.

I also became more aware of his conversational skills too. I’m not entirely sure when we stopped seeing the speech therapist, probably January or February, but by October, it was clear that Jacob was progressing with oral communication. Sometimes it was directive sentences like telling me, “Daddy no talk Mommy” i.e. it was his turn to talk and I should shut up. Or using the word “wonderful” from one of his now-memorized books…when we asked him if he was wonderful, he replied, “No, awesome.” Yep, he was getting the hang of this conversation thing. Even in Septembe,r he had used a sentence with 9 words in it, after going so many months with just two words together. 

November had another milestone…Mommy took a business trip, leaving Daddy home with the cub. Sure, she left on Tuesday and was back Thursday night, but still a milestone. Jacob handled it fine, no giant issues. So we celebrated a week later with a sleepover for our niece. It went so well, Jacob cried like crazy when she left. And again, Jacob jumped forward on his conversational skills. He started being able to say “Andrea”, even if it came out “Andea”. Of course, he’d been saying hippopotamus and cockadoodledoo for months (thanks to Sandra Boynton books). He even managed to squeeze in an Austin Powers impression when Mom asked him to come over and brush his teeth…”Yeah, baby.” And he started saying “I miss..” various things. Like Nana and Poppa. James and Liam (from daycare). And his chair at daycare. Luckily Nana and Poppa came out ahead on that one!

December started more with a whimper, and then proceeded with banging and screaming. Mostly by Jacob. The terrible twos had arrived, which was appropriate as Jacob was now 2.5 years old! A lot of this was when trying to get him to go places rather than stay where he already was…like to daycare. Or coming home from daycare. Or going to the library. Or coming home from the library when he was playing. Generally speaking, he just didn’t like to stop what he was already doing in order to do something else, which is pretty much true today too. Of course, he also wasn’t particularly fond of diaper changes, feeding time, etc. I think, in many ways, it was partly about asserting his own independence but also because he was experiencing greater independence too. We already knew that he could open our front door for example, although he never did when we weren’t there. But he also could figure out how to climb on his chair to reach the phone on top of a bunch of boxes and turn it on. Some of it too was that he was now 28 pounds, it was winter, and he had to go in a heavy winter coat in a baby carrier (our stroller’s wheel was acting up). Just extra “steps” that he didn’t really enjoy.

Yet it was also a month of fun. The juxtaposition was crazy at times. The joy of him reading to his stuffed frog, for example. Cool moment. Experiencing, and I mean FULLY experiencing and engaging in Christmas celebrations. Like when he told us his name was Santa, and we asked if he had a red suit…”umm, noooo?” like we were idiots for asking. Nice. Or asking him what kind of presents he might like from Santa and his response was “blue presents”. No commercialism yet, just fun. Which he had in spades with his grandparents.

I posted a few extra photos in there for Xmas, including a video of my son playing with my brother Bill, partly as all the photos and videos show something that isn’t really “just” Jacob, but around him. Love. The hugs, the playing, the smiles. It is pretty heady stuff to see others around you loving your child as much as you do. And seeing him respond, to light up when they interact. In part, I suppose, because I never had those experiences as a kid with an extended family. Sure, I had lots of brothers and sisters, and my parents, but I’m talking about extended family here of aunts and uncles, grandparents, great grandparents, cousins, the whole shooting match. And in so many photos and videos, just him having a blast. I’m sure there were tears, I’m sure there were dull moments. But that’s not what I see when I look at the clips, I just see love. A pretty amazing feeling as a dad.

The new calendar year started, and Jacob’s Xmas experience was now heavily embedded with his love for toy cars. The cars he played with on tracks were now everywhere. On cardboard boxes, on tracks, on the kitchen floor. It was the start of a love affair that still continues five years later. And just for fun, cuz it is fun, a roaring video.

February was a difficult month for me. It started fine. Jacob was now 1000 days old, nice little milestone. He went tobogganing with his grandparents, he stopped using his soother when going to bed, he was still watching and loving Dinosaur Train (one of the few shows that doesn’t make parents’ ears bleed, in my view, as Andrea and I would quite happily watch it almost on our own!). But Jacob was now 26 months old. And he wasn’t making much progress walking.

So we got him a metal walker with wheels. We borrowed it from the therapy centre. And while Jacob wasn’t really that thrilled with it, I confess, as his Dad, that I hated it. Not the actual walker of course. Or even him using it. It was that he needed it. That my son, my beautiful baby boy, with the awesome laugh and golden heart, had to deal with this shit. It was slowly becoming clear to us, as it had been clear to the physio therapist way back when he was 8 months old, that Jacob’s extra issues were not simply a bit of extra tone that he would eventually grow out of through simple, literal growth. Sure, way back in the NICU, they had ruled out club foot. But J was still walking on his right toes. He could put his foot down flat, but it wasn’t his natural position. Sitting was still a challenge with the extra tightness in his upper legs. He had some limits to his mobility in his arms and hands too.

We had started to hear words like spina bifida, genetic syndromes, spasticity, etc. Cerebral Palsy was trending in the conversations. No one knew. There were possible tests, but not likely conclusive. We’re not sure exactly when that year, but we did do one test with neurology. The doctor was quite definitive when we first met with him. He told us that it was definitely CP, he was sure what he would find with an MRI, he would be able to tell us exactly where in the brain the break in connections was located, and he even thought he would be able to tell us which week of gestation it happened and possibly if it had been a virus or something else. I was impressed with the potential diagnostic result. Except when he got the result, he was equally candid to somewhat jokingly say apparently he had no idea what he was talking about the first time. The MRI came back “unremarkable” i.e. they didn’t find anything. It was normal, nothing to indicate CP. So at that point they kicked us over to genetics, which went basically nowhere fast.

And even if had found something, it wouldn’t have altered treatment in the form of physio. Until we knew more, potentially at somet point, we heard a phrase that we would hear more about in the future — “spastic diplegia of unknown origin”. We were cautioned not to rush to the computer and look up all these terms, as there were wide variations in the symptoms, and no way to know what it would look like. And because the terms were scary and they said not to look, I didn’t look. I had researched things when we were talking about cataracts and surgery and things to do with his eyes. But CP? Nope, I wasn’t searching that until I needed to do so. And as long as we were going to therapy for the 2% that was medical, and celebrating the 98% that was little boy, I could live in my plastic little bubble that my son would not have extra issues to face as he grew older.

Back when Jacob was in the NICU, and I was reading about similar experiences of other parents, there was a thread in the readings that I found troubling. It was the idea that it was okay to “grieve” as the parent…that you had experienced the loss of an ideal of sorts, one that you had hoped for, like a simple, “normal” pregnancy like most parents experience, with a story to tell, a baby to hold, a trip home perhaps the same day. But it was denied to you…instead you had entered a ring of hell that many fortunately never do, even as you knew there were other parents who had descended far deeper than you. So the articles talked about “grieving” for what you had lost as a person, as a parent, the “simple” pleasant birth. It was a crock of shit. Narcisstic, selfish, self-absorbed, claptrap. Compelling, reassuring perhaps, and there are times I approach a part of it, but ultimately horse pucky.

And I was afraid if I researched CP, I would trip over the same sentiment. Parents lamenting that their child wasn’t perfect, that they had been denied that “experience”. Something that I would put in the same basket of those who have uttered the phrase “wrongful birth” and weren’t struck dead by lightning. To be clear, I couldn’t care less about the issues in terms of MY experience or in loving my son. He’s my little awesome possum, no matter what. But telling me that my son might have extra issues, that he might have obstacles to face that could eventually limit him in what he wants to do, before he even has any idea of what those things might be, is a dark side of the universe that is no place to live. Or even visit. Because the injustice of the universe imposing limits on a child is another ring of hell entirely.

And so, as long as I didn’t research things like CP, and we kept doing the therapy, and he kept being an amazing possum making progress, I could envision all of us helping him to hold those limits at bay. But the walker put lie to that delusion. He needed it. He needed help walking. So we got the walker. And he didn’t want to use it. Fortunately, the timing was fortuitous as he started making more progress on his own anyway.

March turned out to be a pretty good month, quite surprising considering it started with eye surgery. Yep, Jacob needed strabismus surgery to straighten his alignment. The surgery is quite common, I know, but since he already had cataract issues to deal with, there were extra risks and complications. Except not for Jacob. Besides the fact that his doctor is awesome, J was also a great little patient. Combine the two and we got textbook quality outcomes. He was a bit groggy in recovery, but within two days he was bouncing off the walls again. And showing more interest in walking.

The success / fun of March continued into April. We did a great Easter egghunt at Nana and Poppa’s, he played the piano some more, he decided he liked dancing too. And he left me speechless with a random phrase from a TV show he saw at the daycare — “Sasquatch is the tallest monkey.” Umm, okay then.

But the big event of the month was Jacob practicing walking with Mom in the upstairs hallway, increasing his distance each time.

Then, finally, the year was over. And Jacob was turning three. He was still practicing walking and improving every time. We had a backyard BBQ to celebrate his birthday, and as you’ll see from the photos, he was looking more and more like our little man than our little boy. He even made a friend with the little girl who lives behind us (her name is Maya, by the way, and they’re still friends).

If I had to decide on a theme for the month, it would be dinosaurs and trains. Jacob had been watching Dinosaur Train for quite some time now, and this was the month he saw for the first time, the Dinosaur Train A-to-Z song. He knew all the dinosaurs already anyway, so it didn’t take much to help him learn all the words. Truly impressive everytime he said one of them, and almost always correctly. He also got trains for his birthday, including a train table, and he loved all of it. And just for fun, he was now easily progressing into reading letters in books and beginning to understand that letters together could make words. He could even spell Jacob, Mommy and Daddy, and perhaps a couple of other words.

Some other stuff happened throughout the year and we just never recorded it anywhere:

• I’m sure he saw respirology sometime during the year. We knew that he had small lungs, as a result of his gestation experience, and so we had a puffer for him. Two in fact — blue for occasional use and orange for preventative use during the winter. But he was doing great, went twice a year for checkups, nothing changed;
• He had been seen by Ears, Nose and Throat, and as mentioned last year, we had that fun experience of hearing “We don’t need to see you again” i.e. discharged!;
• his reflux issues relatively disappeared and we stopped the Ranitidine; and,
• we had a meeting with the Development Pediatrician who asked us questions about how many words he knew, an issue we faced earlier when he was having speech problems, and we actually had a count at one point…except now he was well over 500, and we had completely lost count, so another “tick box” for “no longer applicable.”

As I said, our awesome possum had figured stuff out and was getting on with his life. We were just along for the wonderful ride.