When I started writing these, I didn’t know exactly where I was going to stop. After his birth? When he got settled? When I started not to worry? And then I realized it wasn’t about “becoming Jacob’s Dad” only, but a gradual change to “being Jacob’s Dad”. And once I got past the trauma of the last weeks of pregnancy and the first few weeks of life, the story was almost fun to write. And although they take time to pull together from old notes, photos, Facebook updates, etc., I could trundle along. But when I wrote the last segment back in February 2017, Jacob had just turned three, and I hit a wall.
Because I realized that the coming year, as Jacob went from age 3 to 4, was one of the most difficult years of my life, and I wasn’t sure I was ready to write about any of it.
Because it was the year my mom died. Even now, five years after the fact, as I start to write, the tears have already started.
Because I promised myself that my blog is about my personal truths, and I try not to hide them in happy-go-lucky pictures of cats.
Because I know there are parts that I have to talk about, with Jacob, with her. And who I became, both temporarily and long-term.
While this is the year my mom died, as the segment starts, all we knew was that she was sick. She was 83 and struggling with some health issues. It wasn’t entirely clear what it was, she was having gastro issues…everything would be fine for a couple of weeks, then she’d eat something, and she suddenly couldn’t keep it down for a few days. Trips to the hospital, back home, etc. for June through to August. The doctors suspected cancer but they couldn’t find anything. There were masses, but they weren’t apparently cancerous and they were having trouble locating them with the cameras and biopsy attachments, and she wasn’t well enough for general surgery. But this story isn’t about her either, it’s about me and my role with respect to Jacob, it’s just that it’s hard not to tell both when they’re so intertwined. I was really reluctant for Jacob to visit the hospital to see my mom when she was only in for a day or two here and there, partly to avoid having him near hospital germs if he didn’t have to be, partly as I wasn’t sure how he would react. Normally he only saw hospitals for day patient visits or appointments. No overnight stays, unless it happened to be rollovers from an emergency room visit. Most of which he didn’t remember anyway.
Outside of the time warp with Mom, life with Jacob was continuing apace. During the previous segment when he went from age 2 to 3, I transitioned from a worried dad to a dad with confidence in my son that he would figure out most of whatever life throws at him. He had progressed with physio and occupational therapy, he had more discharges from specialists following him, and we were starting to see what some of his life would be like. Some lifelong challenges for his basic mobility, but not insurmountable ones, as he learned to walk. He handled the move to a new house well, started reading, made some friends, had eye surgery, and generally obsessed about toy cars, trains, and dinosaurs. We were just along for the ride.
June included cookies, milk and Jacob singing for my birthday and Father’s Day, and just a generally more “interactive” experience with my son overall, whether it was for haircuts without screaming, happy DQ visits, or trips to the mall. He had a lot of fun at the cottage too and curling up with Poppa in Peterborough. Andrea took him to Doors Open Ottawa, and he got to ride a train. Mind you, we could have done without the ear infections, croup that sounded like death and an ambulance ride to CHEO, and Jacob trying to “catch” hornets (one swollen cheek and finger later, he was fine, and thought he should go outside to say sorry to the bee!).
I felt like July was the real turning point too for Jacob losing his “texture sensitivity” with food. Some things he just didn’t like the texture of or the messiness. But he started eating corn ON the cob, and while he prefers ice cream in cones, he was willing to consider it in a bowl. We went to Mooney’s Bay for Canada Day, and explored the Experimental Farm. While we were in Peterborough and I was doing hospital stuff with my Mom, Andrea took Jacob with Megan to the Riverview Park and Zoo and he got to ride the small train. We went back to the cottage again, and he got to try out a bouncy castle. He liked it, but I’d say he liked the boat a lot more. He also got to join in for the annual “measurement of the cousins”. On the negative side, Jacob started his occasional “I can’t sleep” bouts when he hits growth spurts and he didn’t like visiting the dentist much. But I feel like we were distracted this month too. Andrea was finishing papers for a course, but the real issue was she was waiting on results of the budget cuts and processes at work to find out if she got to keep her job (she did).
August was a great month to be Jacob’s dad. Sure, he wasn’t thrilled with the Aviation Museum, but no biggie. He did like the helicopter that Dean had flying around their new house though. However, near the end of the month, I took Jacob to the eye doctor at CHEO for a regular checkup, and they did a bit of patching during the exam, which he normally hates. However, he handled it all really well. So I bought him a small treat when he wasn’t looking in the gift store – Don Pteranadon from Dinosaur Train. When I got to the car, I offered to switch dinos with Jacob for the brachiosaurus he was playing with, and he said, “Okay, Daddy. What dinosaur do you have?”. I showed him Don, and his eyes and face lit up with so much joy and wonder, he was speechless. As I put him in the car, I said, “Do you like Don?” He whispered, “No, I *love* Don”. If I never get anything right in fatherhood again, I nailed it that day. We also got rid of his entry level slide for the back yard, he had just outgrown it. And I got to see more of his emerging sense of humour. I killed a spider in our kitchen one morning, and when Jacob asked me what I was doing. I said, “I was getting rid of the spider. I don’t really like spiders.” Jacob immediately said, “But you haven’t TRIED spiders!”. Perfect timing and delivery. I love his humour. In addition, Andrea took him on the train to Peterborough and then on to the cottage, and so he was SO excited to go on the train (even if Mr. Conductor wasn’t there). Andrea also started seeing lots of examples of his personality — Jacob telling her “Watch and learn, Mommy” as they were colouring a picture together, or when she started to ask him a question, and he replied “I don’t want to answer any questions right now.”
September was the month of new phrases, as Jacob’s conversation ability took another leap forward
- his use of “oh, shoot” was better than some possible alternatives;
- when I was joking one time that “*I* didn’t get a yellow and blue yogurt”, he told me “sucks to be you, Daddy”;
- Andrea was trying to get the DVD going, and Jacob told her, “You’d better call Paul, Mommy”; and,
- his negotiating with Andrea when she suggested that “she have half a banana and he could have the other half”, with the counter proposal that maybe “she could have the whole banana, and he would have a cookie”.
He also started to mature a bit in other ways. Trying new foods (shrimp) without heavy prodding, asking for drinks of water or telling us he had to go potty, and a great trip to the cottage again. He even enjoyed the Agricultural Museum. Andrea and I also got to go to Mike and Terry’s wedding, with my mom on Skype, while Jacob went to Becky and Dean’s.
October was the start of hell month for me, or hell year in fact. Mom had progressed through August and September with extended hospitalization. Until at the end of September, they realized, the prognosis was terminal. As I mentioned earlier, they were as relatively “certain” as they could be without formal biopsy analysis to confirm that it was cancer, and Mom knew it. She was certain it was time. So she moved to palliative care, and they stopped feeding her. I’ve skipped over a lot of the treatment stuff, maybe I’ll cover that another time, and I’m going to skip over the family crap that came too. Suffice it to say that six kids who have never agreed on what was for lunch were not well-suited to handling terminal illness of a parent in a consensus. I had already had the call twice from Peterborough that “this was it”, and rushed to her bedside only for her to bounce back and continue along for another couple of weeks.
The challenge for me now was clear: what would we tell Jacob? He was three, almost three and a half. And he hadn’t lost pets even or anyone else. How do you explain death to a three year old? Do you take him to the hospital? Do you let him see her wasting away? Initially my impression was no. Yet that also denies both of them the opportunity to say goodbye. Or even just to see each other, even without the goodbyes. My sister set my mom up on Skype so she could see Jacob, and while it worked well, Mom had lost her voice. So she couldn’t talk. She could really just wave or respond with yes/no moves of her head to questions. Afterwards, I tried to cuddle with him, wanting comfort as much as giving it, and so I said things like, “Wasn’t that great to see Nan?”. Except Jacob could see through it. “But she never responded, she never answered me.” It was more heartbreaking than heartwarming.
I got another call that it was “now”, which just meant heading home earlier than intended, I was going home every weekend anyway. Which also meant I had to miss a friend’s wedding here in Ottawa. My sister was spending almost 24/7 there and I spelled her out for a week. During the day, the other siblings came and went, and then I stayed overnight in her room. My brother did the same another week. Mom wasn’t in any pain, and she was lucid to the end. They estimated 3-4 weeks after entering palliative care.
We decided we would take Jacob in after all. Partly as she had her voice back for awhile. Weak, but audible. So we took him in, he got some fun moments with her, and gave her one of his dinosaurs to keep. It was all I could do to keep it together in the room. My saying goodbye was easier than watching my son see her for the last time.
But others’ lives continued, even if hers was declining. Jacob went to Kiddie Kobbler on St. Laurent for the first time. The reason that is significant is that with his improvements in walking, it was time for him to have slightly better shoes. Rob the Shoeman is the guru of Ottawa when it comes to kids with not-so-normal walking patterns, and he was great with Jacob. He even gave him a dinosaur! Jacob loved the outing. Jacob also beat Andrea at Snakes and Ladders, and helped her pick up leaves, and took naps on the floor of his room. Where was I? Either physically or mentally in Peterborough. Although we did find time for Hallowe’en.
I said above that Mom had moved to palliative care, and basically this meant she was no longer receiving food or water. She had a tictac. A mouthful of birthday cake (which she immediately threw up). Part of a popsicle. Some ice chips. Nothing by way of sustenance. They estimated she would likely last 3-4 weeks. The start of November was week five, and she made it to week seven. I got the fourth call that “this was it” at the end of week six, and so we rushed to Peterborough for the fourth time. By Sunday, it was obvious she wasn’t going yet, and while the Monday was a stretched November 11th holiday, I had to go back. For the first time, Mom actually questioned my leaving, like she didn’t want me to go. She had said nothing the previous ten or twelve visits. But she understood that Jacob had to get to school, Andrea and I had to go to work, etc. I kind of wished my awareness had been stronger. She was probably trying to tell me it was close, but I was juggling everything else too, and I missed it.
Don’t get me wrong, we had already said our goodbyes. Long conversations when I was with her. Not a lot of words, some of it just shared silences. But not without peril. She had a number of, well, deathbed requests to make of me. There were a bunch of things she wanted me to do, to put her mind at ease that they would be taken care of as she wanted them done. And as one of the co-executors, her youngest son, and the one who had done similar things after my dad’s death with her, I guess she trusted me enough to ask. Some were easy to accept, if not easy to do. One was impossible, which I told her, and she accepted that I would do my best. I did the best I was able, not sure it was my best, and had limited success. Another I had to refuse. I offered to help her ask someone else with that one, but she chose to let it go instead. I would have loved to say yes, and if I was single, I might have accepted, but with a family, I had to put their interests first and decline. One of the hardest things I ever had to say to my mom, but she understood why, and she wasn’t angry with me I don’t think. So we had made our peace, as I had with my Dad before he died. Well, actually, more so since with my Dad it was “possible death”, whereas with her it was certain. But I digress, although it’s important to know where my head was at as it affected me over the next year — as a son, as a person, as a worker, as a husband, and as a father.
I got the call the following Friday — four days later, almost seven weeks after she entered palliative care. The initial autopsy showed little, but the full autopsy eventually showed Signet Ring Cell Cancer, stage 4. Incredibly hard to detect as it lives in the tissue of the organs, and unless you biopsy the exact spot of one of the rings, you’ll miss it. All the signs, but extremely difficult to detect.
I’d like to think Jacob was oblivious, as he learned about things like Bunny Frou Frou and the Blue Faerie. Or that O-R-E-O spells Oreo cookies when I tried to spell it and keep him in the dark. Or counting to 8 in french (from Andrea), english, and Spanish (Dora and Andrea). And a song he could “twist” to (although he added headbanging and spinning in circles as well).
When it was time for the funeral, I did take him to the wake, and tried to stand between him and the open casket for a long time. Eventually I let him see her, but he wasn’t interested. Andrea’s parents looked after him throughout, while I focused on things like the eulogy, funeral arrangements, and staying vertical. Jacob cleaned up pretty well though in prep, although I think he was more interested in visiting PlayStreet (an indoor playground).
After the funeral, I wanted to go for a drive just to clear my head. The natural place to do that was out by the lake, even if it doesn’t look the same any more. Eerie setting for the day though.
After the previous few months, we tried to return to normal in December. We put up the tree on December 1st, started adjusting to winter coats and the challenge of putting him in the carseat, and went to see Santa (J was a bit shy). J was happy to go shopping for gifts. When I asked him what he thought we should get Mommy, he said a train. When I asked him what he thought Mommy would LIKE, he said, “a train!”. I noticed a theme. For options for himself, we went to Tiggy Winkles and what was he most excited about? A stool that they use for stocking inventory. He got a video from Santa, and we spent a week in Peterborough over Christmas. Part of me was thinking that J and A had put up with a lot of crap in the last few months with me being absent or stressed, but I confess, my heart really wasn’t in it. I found it a very tough week to weather. But it was also the start of another new beginning in our home. Andrea was now on leave for 9 months to blast through a bunch of coursework for her Masters in Education, and if truth be told, to enjoy some last fun time with Jacob before he started school. Which also meant he was no longer in full-time daycare.
As I said for December, Andrea was now on leave for school and time with Jacob. We took him to the ROM in Toronto to see the dinosaur exhibit, but most of January was about Andrea and Jacob being together. Me? I was dealing with estate stuff and sibling wrangling. I doubt I was much fun to live with. And we started thinking about Jacob going to school.
Well, more than thinking actually. We actually went to meet with two possible schools. We had three in mind, we just had no idea what Jacob would need. He was 3.5 years old now, but he wasn’t potty trained yet, and he still wasn’t great with his walking. He could walk unassisted, sure, but we had no real prognosis for the future. And we were unsure what he’d need when he started school. So we had three possible schools in mind.
The first was at CHEO itself, or actually the OCTC building behind CHEO. It was unlikely he would need that level of support, but we didn’t know. It was on our backup list if need be.
The second was Briargreen Public School. This was an open-concept school in the neighbourhood west of us that had junior kindergarten, and we were in their catch basin. We went and met with the principal, a Ms. Kirkwood, and the meeting went well. The whole school was one floor, and the only places with steps was into and out of the library (too many steps tired him out quickly, and he couldn’t do them fast, so it was a concern). I was a bit skeptical of an “open-concept” school, mostly as I grew up in standard 1950s style educational buildings. But it was quite welcoming and didn’t seem to be too “hippie-dippie”. 🙂 Plus the J/K and S/K rooms were relatively traditional. With washrooms in the room so that he wouldn’t be trundling along hallways to go. Now, there’s something I didn’t mention up front and it became VERY relevant later on. Jacob went with us. So the principal could immediately assess his mobility, physical challenges, etc., and also see that he had no cognitive ones other than personality-based shyness.
By contrast, we went to an alternative school for a visit. Except it was in the afternoon, Jacob was tired, and we left him at the daycare. So they never met him. Which means we spent 90 minutes talking about what our son’s limitations were. They kept prodding on physical and mental challenges, trying to see how affected he was. Which they would have been able to do in 10 seconds if he was there, but he wasn’t. So we had to explain. And explain. And explain. During the tour, it was clear most of the school was cinder block. Concrete everywhere. An institution. It felt like a reform school, or a jail. It was cold, it was sterile, and not the least bit welcoming. We had a 15 minute conversation about whether Jacob would be able to sit on the benches for the tables at lunch and be able to get on and off by himself.
When we left the school, I drove about 3 blocks and had to pull over. I couldn’t see for the tears. I felt like we had been disrespecting Jacob so much in the visit. Talking about him like he was a patient, the exact thing I wanted to avoid in all interactions with anyone. He is a little boy first and foremost. Not a number. Not a file. Not an issue. Not a problem to manage.
So, not that Andrea liked it any better than I did, my response was clear and unequivocal — no f***ing way was my son going to be warehoused at that institution. Every kid deserved better than that school, and Jacob would absolutely have it. We started gearing towards Briargreen, but it would be a hill climb, not an easy stroll.
By February, we were fully into the swing of Andrea being at home while juggling school work, and dealing with full-on winter activities like shoveling and wading through snowdrifts on the way to and from the bus stop. However, it wasn’t all bad. She took him to the Children’s Museum and Story Time at the library; Jacob was able to write in the Valentine’s Day Card himself; Jacob got the theme from Chuck and Friends in my head repeatedly (Over, round and through, trucks go, see and do…so let’s go me and you). And we went to a very nice wedding for Scott and Dana (wow, was that almost five years ago????) at Chateau Montebello, with Jacob spending most of the reception evening in a hotel room with his cousins and a babysitter.
March was a bit of a transition month, partly for weather, partly for other things. Snow started melting in places, leaving puddles for Jacob to splash around in. The pediatric ophthalmologist discharged J from three month visits to six month visits, a testament to the great work that Andrea and Jacob had done in the previous four years, and reflected Jacob showing signs of 20/30 corrected vision when “normal” is 20/50 for age 3. Jacob jumped another plateau in his humour — he started to pun. He was chomping on a carrot so hard that I asked him if he was a T-Rex, and he told me it was a carrot, not carrion! And Andrea continued to enjoy the time with Jacob, with playdates and visits to the office. Easter gave us a chance to visit Peterborough again (and for me to deal with some house/estate stuff), and for Andrea and Jacob (with others) to visit the Riverview Park and Zoo at the start of the season (an ongoing tradition).
April was about the time that the estate stuff really started to drag me down. We’d had the drama stuff earlier, but this was when it really started to drag for the amount of work required to get the house ready for sale — or even just emptied. And I was starting to be a zombie. I just had no energy for anything other than the basics in life. And yet J could find ways to make me laugh.
Jacob got a time out the one day in his room for being uncooperative, so I asked him why he was doing that. He said, “Because it is kind of fun.” I said, “No, it really isn’t. Because then we have to tell you multiple times, etc.”. He said, “I said, ‘kind of’ fun.” I was trying hard not to laugh, but I said, “No, that’s isn’t a good answer Jacob.” He said, in a shocked voice, “You wouldn’t say NO to a bunny???”. There is no way I was keeping a straight face at that point.
He also was introduced to how knock knock jokes work. So, KK, WT, Butter, Butter who?, Butter take an umbrella, looks like it might rain out there. Trust me, that killed in the 3-4yo demographic in our household. The best part was watching his brain process butter / better. You could see the wheels churn and his face light up as he realized “how” the joke worked. 🙂
Yet Andrea was the one keeping the trains running. Including actually taking J to the O-Train. We also got him started on swimming lessons, or at least the first ones since his “mommy and me” classes as a baby. Plus with the change in season, Andrea could take the cub to the park.
And although I was dead, I was still hyper vigilant for J’s health. I was getting J ready for bed at the end of the month, when I noticed a dark shadow under his sternum. It felt like there was a giant “hole” behind it, and when I pressed on it, Jacob reacted immediately. Even Andrea thought it felt weird, so off we went to CHEO. Four hours later, and a “he’s fine”, we came back home, but my brain was on fire for several days afterwards.
With all that going on though, we apparently needed a bit more, so we started a backyard reno — a new deck (no, not built by us, just contracted out).
May was another series of weeks of work interrupted by weekends of estate stuff and trying to maintain something resembling a normal life as Spring was officially here. I treated myself to ComicCon, while A & J went to Peterborough for Mother’s Day, but I was starting to realize that something wasn’t quite right with me. I was drifting through days.
Our Rock Star Super Jacob and I spent some time reading “Go Dogs Go”, and it was awesome watching him learn to read. He was even more excited when I told him that not only would he be able to read books to himself, he’d be able to read to ME at some point too. Although he found it funnier when I was helping him get ready for bed one night and did a “basketball throw” of his shirt across the room to his hamper and it landed about 8 inches short. Jacob told me that Daddy kept missing because “you have no style”. Total burn moment. 🙂
We had our deck finished, and we had our first barbecue on it. We tried to visit Gatineau Park, but ended up on a long car ride to Quyon instead.
But the big event of the month was Jacob starting “serial casting”. Essentially, Jacob has trouble walking because the heel cord up the back of his shin is really tight — it pulls tight partly because his brain tells it to tighten, and partly because his leg muscles in his thighs pull it tighter, compensating for weak core muscles, etc. The end result is the heel cord is pulled taut, and when he walks, his right heel comes up — he pronates on his right tippy toes. It isn’t a completely physical issue since if you tell him to put his foot flat, he can. Temporarily. But when he stops concentrating on it, it’ll come back up. So basically they stretch his heel cord a bit, and then they cast him in that position for five days. Then they take it off for two days, restretch a bit farther, and recast for another five days. Five days on, two days off. When they’re done, the heel cord is stretched long enough so that his heel will theoretically go flat. It’s still “tight” but long enough that the pulling doesn’t raise the heel from flat all the time.
We were really worried first about how it would all go as a process and second if it would work. On May 8th, we did the first cast. It was a bit of an elaborate process, four or five people flitting around the clinic room at CHEO where we had it done, but no machines involved, so it went pretty well. Well, awesome really. When we were leaving, they told us that it might take awhile for Jacob to get used to the cast, and he might not be able to walk right away, or be very steady, etc. As we were leaving the clinic in a wheelchair, we stopped for a minute, and Jacob asked if he could go play with one of the displays. Uhh, sure, why not? He got out of the chair and practically RAN to the toys. No problem adjusting at all. In fact, I would say it was almost the best he’d ever run. Certainly the most stable.
Of course, that was for the cast going on, how would it be coming off? Just as painless. In fact, because it vibrated, it was tickling him and he laughed almost the whole time. Some headphones helped to dull the noise, and the first cast was “done”.
Cast number two, three and four followed. No complaints about it, or that it was unfair, etc.
And then the year ended. Jacob turned four.
As I said at the beginning, I almost dreaded writing this one. And getting through the first six months was a challenge in the writing (well, in living it too, I suppose). But what I find interesting is how little of what I experienced in the year has “resonance” for me. I remember the experiences and the stories, remember the photos. Yet I have little sense of the feelings that went with them, other than worry or if Jacob was making me laugh. The extreme emotions remain, the rest of the time seems rather flat. I didn’t yet know I was drifting through grief, but I was. And I was grumpy, resentful, spiteful at times. Plus Andrea was still carrying extra load. Sure, she was doing part-time school and part-time with Jacob, but on top of that, I wasn’t very present even when I was physically present.
But that’s a story for another year…