Jacob turning one year old was a bit of a formal “page-turner” for me. Before that, it was undeniably the hardest thing I had ever been through in my life as a person, not just “as a dad”. The first two weeks in the NICU were about survival of all three of us…him physically, us emotionally and mentally. The next three months were less acute, obviously, but still some panics with failure to thrive, etc. Then there was the eye surgery and lots of other specialists. I regularly tried to make light of the fact that we saw almost every specialist in the hospital except a vet (a gross exaggeration), and I couldn’t be sure there wasn’t one in there somewhere.

But I felt like the year was a state of constant tension. I mentioned in the last post that there was the “relief” of January — the first time we made it through an entire month without a visit to the Children’s Hospital emergency. But by the time he turned 1, we were dealing with a lot more normal stuff. The balance was shifting and we were enjoying him trying new things, finding his own laugh, scooting around commando-style, playing piano at Nana and Poppa’s. 

But he still had some issues. We were still dealing with a herniated umbilical cord that was going down, and he had reflux issues to address. And he was starting to deal with physical therapy issues more and more. It was slowly becoming evident that he did have extra tone in his body so we added a new group to our medical treatment roster — the Ottawa Children’s Treatment Centre (OCTC). Attached to CHEO, it was designed to be a holistic community partner so that kids needing multiple treatments like PT, occupational therapy (OT), speech therapy, etc., could have multiple interventions in a coordinated fashion while being followed by a developmental pediatrician. Sure, we still had the pediatrician at the local clinic that was following him, but this one would now help us access a range of whatever services Jacob might need over time.

I loved the people, but I hated the place. Some of that is because the first interaction we had with a social worker went wrong early. I didn’t know why Jacob would need a social worker. Seemed odd, honestly. And to be blunt, we REALLY weren’t looking to add any more appointments to our schedule, we already had more than enough. Except the social worker wasn’t really for Jacob. She was to help us. To help us deal with the fact that our child had “issues”. That he was “different”, “special”, “alternatively enabled”, whatever phrase you wanted to use. Except he wasn’t. Not officially, not yet. There was no diagnosis of anything. He was just having physio. Most of the first meeting was about how we could get forms filled out, and she would help with that, to get a handicapped parking pass to help ease the burden of having to carry him when he was bigger or when he might need a wheelchair. Or to get additional assistance from the government, extra money we could get for care, just as soon as the pediatrician and we as parents signed that Jacob was handicapped or disabled and submitted the forms. Free money, who wouldn’t want that?

Us. Because there was no way in hell I was signing that form. First of all, we’re fortunate in that my wife and I have damn good jobs with excellent salaries. We aren’t rich by traditional standards, still have huge mortgage, etc., but we are seriously comfortable and not worrying too much about paycheques. So we didn’t need the money as much as many families might. Second of all, Jacob hadn’t been diagnosed with anything other than a sore neck and MAYBE some tone in his body, nothing that looked at all like a prolonged disability. Sure, some part of my belief was likely denial, it goes with the territory. But most of it was, “WTF?” time. He was doing well, no giant issues. How could we sign something we didn’t yet know or believe, or even, really, suspect?

Yet there were some things that we did need help with, and OCTC was there to engage over time, so we took advantage of feeding experts and OTs. While he had said some words to us, like “thank you Mom”, or “thank you Dad”, and even “I love you”, there were few words he was saying. In the parlance of the speech therapist we saw for awhile, he had stopped directing phrases to us, even if he understood simple instructions. He started using a greater variety of sounds though, trying to make some words, but slow progress. And as he got a bit bigger and we tried to transition to other foods, he really didn’t like solid food much…some for taste, some for texture, some for his reflux problems. Enough to worry us, but he eventually grew out of it. Which was also part of our experience…lots of worry, lots of attention to issues, but the biggest “solution” was time and him figuring some stuff out. Some stuff remained though, with reflux meds and stool softeners.

Life was proceeding. In the summer, when he was 14 months, we took him on an airplane to B.C. to visit Andrea’s aunt and uncle. Jacob was a fantastic little traveler. Fell asleep on take-off, no issues while flying, fell asleep again on landing. We took him lots of places, nothing particularly seemed “awesome” to him, but let’s face it, he was only 14 months old.

Jacob did parties with other kids, and while he was generally less mobile than them, he had fun it seemed. He expanded his crawling, tried swimming at the cottage.

Next thing we knew it was September, and Jacob was 15 months. But the significance of September was that it was time for Andrea to return to work and Jacob to start daycare. We checked out a bunch of daycare options i.e. Andrea searched high and low online while I did nothing. And then we went to check out some places. We had considered a place near work, but we read some pros and cons online about daycares close to work offices, which sounds great initially (particularly if you have to rush over for something, or when doing pickups at the end of the day), but the big “con” is that they also mean your kid is commuting with you. An extra hour a day in the car in traffic rather than, say, playing at the daycare. So we shifted our focus towards our own neighbourhood. Ideally we wanted one on the way to / from work, and we ended up checking out three.

The first was a commercial place. Right on a very busy street with crappy entrances and I thought drop offs were going to be a nightmare. Plus it seemed like a school. There are pros and cons to that of course, but it was going to be lots of kids ALL the time. Rough guess would be somewhere between 50 and 75, although only eight in a group, etc. It was a viable option, but neither of us fell in love with it. Professional, likely safe, very bright. But play areas outside seemed a bit limited when we were there, and again, next to a VERY BUSY ROAD.

The second one we tried was a place only about three blocks from our house. Seemed like a good option. Hours weren’t as convenient, and there were dogs next door. Jacob had never really experienced dogs much before, wasn’t really comfortable with them nor a fan yet, and to let my bias show, these were also pitbulls. A daycare next to a family of pitbulls, what could possibly go wrong? Yeah, I know all the great stories from people about pitbulls, and you’re welcome to put your baby that can’t defend itself next to a set of dogs you don’t know anything about nor their history, nor their owner either. I would have wanted a lot more info about them, but the daycare wasn’t really selling me either. It didn’t look welcoming to kids…all sterile, don’t remember seeing toys, about the only positive thing I felt was that it was near the greenbelt and there weren’t many kids. Woman was okay, but no warm fuzzies. It was private, we met with her, and it was like, “So, any questions?” more so than telling us anything in particular about herself. We didn’t even really know all the right questions to ask.

But the third (and final) one felt like winning the daycare lottery. Again, it was a private daycare in her home and she had usually 3 or 4 other kids (to a max of five), and after school, her own three would return home. It was in a townhouse, the kids played on the main floor with sleeping upstairs, and there was a little playground out the back of their house about a half block away. The house was a bit small, and if you had put me in the living room with five kids, I would have went insane. But from J’s perspective, the room was easily big enough.

Much more importantly, she had experience dealing with kids with extra issues. We didn’t know what issues Jacob had, but he was still commando crawling, not fully upright yet, and still had trouble with some mobility. She had worked in assistance homes, dealt with kids of tons of different backgrounds and diagnoses, asked all the right intelligent questions, and generally, was totally comforting. Stress-reducing.

But that wasn’t the selling point for me. And, no, it wasn’t price either. It was that she was ORGANIZED. She had a binder that she pulled out, all tabbed. Here are our security clearances (for her and her husband). Here are our First Aid certifications. Here are our contact numbers, sample contract, sample “feedback book/log” of what the kids did that day, how long they slept, what they ate, if there were any issues, any milestones they demonstrated, etc. It was several inches thick and it was clear, “This is my business, and I know what I’m doing.”

Honestly, she was more qualified to look after Jacob than I was. Hell, she was more qualified to look after ME than I was. And she walked us through all the questions we should have been asking. Ten minutes in and I was pretty much sold. We were with her for an hour.  She didn’t care about Jacob not being 18 months yet, nor walking, nor that he was still in diapers. Everything was great. I wanted to sign on the spot, but we did our due diligence.

Everything checked out, and so in September, Jacob started going to her daycare. She also allowed him to go part-time, which many daycares didn’t. And it continued to be awesome for the organization, and the experience, but like any daycare, there are always issues. Jacob wasn’t great at getting away from the other kids, and so sometimes when he was “pushed” too far with them being too close to him or in his space, he’d get them to back off by biting them. He couldn’t verbalize it but he could get them to move away. He liked the other kids, but there wasn’t any super close / special bonding, I don’t think. He did like her daughter who had just started school. Valerie was not much older than he was, cute, and had blonde hair. He was totally taken with her. And he adored the woman.

For us, some of the logistics were a hard adjustment. Getting to the daycare in the morning, dropping Jacob, driving to work, driving back, and picking him up by 6:00 every day was a challenge. Even slight delays in traffic made us conscious of how close to the 6:00 deadline we were. Since Andrea and I commuted together, it meant he was there for our work day plus our commute times. Most of the other kids had either parents who worked closer, or who split drop-off and pick-ups, so usually the rest of the kids were picked up well before us. And sometimes she would give us little comments, small complaints, about Jacob not liking always being the last one picked up, would be nice to be earlier, standard stuff, no biggie. If that is the worst thing that happens with your daycare, you count yourself as lucky as we did.

Jacob passed his “500 days old” mark on Thanksgiving, and for Hallowe’en, Andrea took him trick or treating to a house or two in his Panda costume. Through the fall, he fell off the change table and gave himself a shiner while I was trying to put away his contacts. Regular kid stuff. He was playing in drawers, crawling some more, hanging out, laughing, playing with a sensor lamp at Nan’s house, going to the park, learning to feed himself.

When he was 18 months old, around November/December, his mobility issues started becoming much more evident. It wasn’t just he was a little slower than other kids for milestones on mobility, he was considerably behind, even if we treated him as a preemie and adjusted for several weeks of “delay”. He was still commando crawling everywhere he went, albeit faster and faster and he had added his second leg to the crawl. He did start to put more weight on his arms, literally “rising” to actual crawling, and then walking on his knees. We had told the physio that we hoped he would be walking by 18 months, but he wasn’t even close. And we weren’t even sure why. It was just an “unknown”.

I remember the social worker had asked us what sort of things we were concerned about, and one of the things was mobility and walking. I am embarrassed to admit, but I try to be candid and honest in these posts about my experiences, I really wanted him to walk unassisted. I didn’t want him to have metal braces on his legs, or hand supports, or a walker, etc. That seemed a “level” beyond what I thought he would need, and hoped he would not need. When she asked if there was a date by which we would feel he SHOULD be walking, i.e. if he wasn’t walking by that time, we would thing it was a sign of a problem, I naively said “two years”. For me, I hadn’t really given it much thought, but I thought all kids walked by two years old. And she jumped all over me about my expectations. To which I really wanted to say, “Hey! You asked me what I *thought* off the top of my head. Back off!”. But instead I simply wondered if I was being a terrible dad, with weird and over-hyped expectations for Jacob. That I was “judging” him, rather than simply “hoping” good things for him. And feeling if somehow hoping he could walk unassisted meant that I was somehow slamming kids who didn’t.

The other big development when Jacob was 18 months old had nothing to do with Jacob. Andrea made a decision…she wanted to go back to school to get her Master’s degree in education. Or, as she describes it, “how your moronic wife decided it would be a good idea to start a master’s degree while Jacob was 18 months old”. Working, going to school, looking after an 18 month old. Even with me in the co-parents seat, the degree was definitely a lot of work, something I’ll return to in subsequent updates.

We survived December, enjoyed Christmas, did some visiting. And then hell started for all of us.

It started with Jacob getting an ear infection and pink eye, and possible PNEUMONIA just after Xmas. It wasn’t tied to any development issues, all kids get sick, and as we had been told, they get sick more often when they’re in daycare or school. But Jacob being sick regularly divided my tension into two camps, in a way.

First, with Jacob sick, we were worried about him as all parents worry. Except for me, my anxiety level would spike whenever his appetite would drop. If he wasn’t eating, I’d get stressed. Not because he didn’t eat, but because whenever he got REALLY sick, when something was wrong in the first year, the first symptom had always been decreased appetite. Always. But sometimes not eating is just not being hungry, not a sign of a coming parenting crisis. Which didn’t stop me from going insane a few times at the grocery store while buying baby food just to make sure we were always stocked. One time, we needed a jar or two to get us to the weekend when I normally would buy full groceries, and I ended up buying 8 jars of veggies, 8 jars of meat-related ones, and 14 jars of fruit. And that was on top of the 20 yogurts in the fridge and the small number of jars of baby food we already had in the cupboard. Daddy was a nutbar, Jacob! Deal with it! Which he did. By ignoring it mostly.

Second, with Jacob sick, we got sick. Continuously. From January to June. For those six months, one of the three of us was ALWAYS sick. Heck, I was sick for almost the whole time myself. I’d get sick, I’d start to kick it, would be just about over it, and in would come another bug to wipe us out. We were going insane. None of it really serious, just draining.

In April, just before he turned 2, we took him to CHEO for an ultrasound. Of his heart. Yeah, that’s as scary as it sounds. But in some ways, oddly not. It was more abstract fear. More “What if?”, cuz we were doing it as a precaution. There were no problems, they just wanted to be sure there was no murmur or other stuff going on. He was fine. And the part that wasn’t fine wasn’t really acute.

They gave him a sedative, and it worked REALLY well. The dose supposedly would wipe kids out for about 45 minutes. Not Jacob. He was out cold for FOUR hours, and we couldn’t come home until he was awake enough for them to say, “Yep, good to go.” One of the orderlies had to stay with us for quite some time waiting. Finally, Jacob woke up, threw up (the sedative irritated his GI tract), cried, went back to sleep, woke up again, and was fine. Super sleepy but fine.

More importantly, for my sanity anyway, Jacob’s sense of humour began to develop. One time he was trying to imitate a sound I liked to make, and I teased him by saying, “Are you mocking me?”. To which he replied with a grin, “Mock, mock.” Another day, I was putting a shirt on him, pulled it down, did up the buttons, asked him how he thought he looked when I was done. His response? “Hot.” The most awesome feeling in the world. Way better than listening to the song “Willoughby wallabye wee” a thousand times, but fun to hear J try to sing it too. In addition, we got to see some of his alertness manifest it further into obvious intelligence. He loved to line his cars up in straight lines, constantly sorting them this way and that. We also had a set of wooden condiment bottle toys that were shaped for specific sized lids, and he was really good at matching the lids to the right bottles.

And a lot of the little issues being monitored by specialists at CHEO were disappearing. Which was also good simply for the fact we were starting to forget some of his “patient history”. We created a chart that had big issues like “gastro” and “vision” down the side, and a time line of every three months across the top with the major developments of each time segment. It was the only way to keep it straight when someone asked us when such and such an event happened or other “relevant” details. It was three pages long, and the first time we went to CHEO emerg with it, they wanted a copy to put on the file. So we did. There’s something really weird knowing you have summary docs in the official medical files of your son at the hospital. But as Jacob continued to grow, and to outgrow some of the issues, we got to repeatedly hear the phrase, “We don’t need to see you anymore”. So J was discharged from that specialist, and we tried not to sprint for the exits each time. 

Mainly, though, Jacob was 98% little boy. Maybe even 99% most days. My little guy.