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The Writing Life of a Tadpole

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The Writing Life of a Tadpole
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Being Jacob’s Dad, Part 14: 3 to 4 years

The Writing Life of a Tadpole
November 20 2017

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…

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Posted in Family, To Be Updated | Tagged casts, fatherhood, Jacob, kids, parenting, personal, wife | Leave a reply
Family image, 2 pandas 1 penguin

Being Jacob’s Dad, Part 13: 2 to 3 years

The Writing Life of a Tadpole
February 28 2017

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.

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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.

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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.

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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.

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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.

https://polywogg.ca/pandafamily/upload/2018/02/08/20180208160131-bcb7d607.mp4

 

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.

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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.

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

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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.

https://polywogg.ca/pandafamily/upload/2018/02/08/20180208200705-78e233d9.mp4

 

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.

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Being Jacob’s Dad, Part 12: 1 to 2 years

The Writing Life of a Tadpole
February 22 2017

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.

https://polywogg.ca/pandafamily/upload/2018/02/04/20180204010928-f2951b8d.mp4

 

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.

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Being Jacob’s Dad, Part 11: 6 mths to 1 year

The Writing Life of a Tadpole
February 21 2017

Back when I started writing these posts (Becoming Jacob’s Dad, Part 1: The early days), I was excited to tell the story. It was 2015, Jacob was just turning six, and I thought, “Okay, I’m ready to share.” Turns out that I wasn’t, not really. The stories of the NICU, surgeries, stress, coming home, failure to thrive, all of it…I thought at least I was ready, at best it would be cathartic. Nope, it was traumatic to write the stories, to relive the moments whose rawness ripped at my soul as I typed the words. Not a single post made it to the screen without tears running down my face. Sometimes good tears, tears of relief. Mostly tears from remembered trauma, the fear coming back to me. When I left off the previous post (Being Jacob’s Dad, Part 10: Months 4, 5 and 6), we had managed to do the eye surgery and learned to put Jacob’s lenses in, and I felt I could start to breathe again.

Jacob was now six months old, and we started feeding him some more baby food. Carrots, for example. Normal stuff, with a small twist. I mentioned earlier that he had an asymetrical jaw, and so there was concern that in addition to his latching challenges, Jacob might have trouble eating. Figuring out how to work his tongue, work around a spoon, etc. Most of it though turned out to be non-issues, or at least, he figured it out. We dealt with texture issues, but not feeding per se. And he had a nice new tooth to bite Daddy with.

He really liked his vibrating chair.

And he adjusted to wearing his glasses as well as the lenses, as needed. Although, I confess, I didn’t share many pics of him with his glasses, it didn’t exactly look like him in some of them. Not the most flattering frames either, but then again, not much variety or choice either.

Mostly we were excited by the idea of baby’s first Xmas.

Yep, we made sure he was (almost obnoxiously) completely adorable. He got to experience Xmas dinner at Nan’s, with the Sadler family. Just the thought in retrospect, given how few years my mom got to enjoy him, is enough to trigger the waterworks for me.

In January, it was time to up the game: Mommy and Me swim lessons! He started trying to self-feed with the bottle some more, and just for fun, we let him play in a box.

https://polywogg.ca/pandafamily/upload/2018/02/03/20180203215616-9d773f46.mp4

 

In February, he did more self-feeding, just more independent, more interactive, more mobile, more active. Normal stuff.

https://polywogg.ca/pandafamily/upload/2018/02/03/20180203215851-cac84f42.mp4

 

https://polywogg.ca/pandafamily/upload/2018/02/03/20180203215933-3dac4a4a.mp4

 

Playgroups were fun in March, but it was also a bit of a mixed bag experience. Great to see the moms, and the kids, sure; but it also opened up the inevitable self-comparisons seeing Jacob lag behind some of the other kids in terms of development. Less mobile, more trouble sitting. We knew that he had torticollis (stiffness) in his neck and we were now seeing a physiotherapist to try and work that out. But it seemed like perhaps more than that. Yet he was incredibly happy.

We did the trip home in April, and he was no longer a baby all of a sudden — he was really looking like a little boy. Getting big! Rocking the shades. We even took him out on his first official meal with others (a brunch with Aliza and Vivian).

And we recorded our favorite video of Jacob laughing.

https://polywogg.ca/pandafamily/upload/2018/02/04/20180204002530-dfad5b12.mp4

 

May was a big month. Not only was Jacob turning 1 year old at the end of it, but it was also the first Mother’s Day, first haircut, fun fun fun.

It was not, unfortunately, all sunshine and roses. Separate from the various activities above, we continued to monitor his milestones.

We spent New Year’s Eve at CHEO emergency, as Jacob screamed as they took blood samples. He had a rash and a temp spike to 39.3, vomiting, cramping, gas, inconsolable crying, refused to eat. All around unhappy. And we just missed our goal of no emergency visits in December by only three hours! However, he did avoid emerg in January, which was a godsend. A strange milestone for most, a crying occasion for me.

Come February, he rolled on to his stomach, which was good to see. In March, we almost had to hospitalize him for dehydration, but then he rebounded with improved health and a third tooth! April closed out with him learning to say Dad, and into May with improved sitting and beginning to commando crawl. We also had to start our search for a daycare, which I’ll talk more about in the next post when he actually goes to daycare.

We also started to have to confront a reality. Jacob’s physio issues were not all torticollis (stiffness) in his neck. He was tight in his hamstrings, something was going on with his shins and heel cords, he had some issues with his core, and perhaps even his arms and shoulder. The physios weren’t sure if he was right for referral to the Ottawa Children’s Treatment Centre or not.

Technically, OCTC is for children with “multiple” issues so they can coordinate treatment. Yet Jacob was mainly, so far, only dealing with the PT issues. Was it worth referring or not? I confess it seemed scary to me that they thought he had other issues too, but also was it worth it? He was doing okay now, wasn’t he?

2% medical, 98% little boy. That’s the mantra I was still holding to for Jacob as he turned one year old.

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Being Jacob’s Dad: Part 10 – Months 4, 5 and 6

The Writing Life of a Tadpole
June 10 2015

Life returns to normal

With the surgery over, and the only real issue being eye drops for a couple of weeks, life returned to our cocoon version of normal. Some friends threw a shower for Andrea on the following weekend, and I was so grateful. It seems weird to say, but I kind of feel like Andrea got ripped off. An atypical pregnancy, complete with scary PPROM and 10 weeks bed rest. An atypical birth, including C-section, delay in getting to hold him, and two weeks in the NICU. Then the week from hell. Then the surgery. Multiple medical appointments each week. The end of breastfeeding. When did she get to have the FUN part of being a new mom?

The shower was a small milestone to me — it was another step in saying, “Yes, it’s atypical, but we will STILL do normal stuff around it.” It was kind of our new unspoken resolve. Yes, there was other stuff going on, but it wouldn’t define all of our life. It couldn’t, we wouldn’t let it. No matter what.

September dawned and I finally completed my first full week of work since Jacob was born, without having to go to appointments or rush home for an emergency. Jacob got back on the regular growth chart, reaching the 10th percentile. We stopped having to see the dietician, which hadn’t been that useful most of the time anyway. He wasn’t comfortable on his stomach, but he held his head up at 3-4 months, managed to roll onto his side. Normal stuff.

I was dreading the end of the month though. Four weeks after Jacob’s surgery, he got his first pair of glasses and lenses. By then, I knew a lot more about options and expectations. I researched and talked to people online and offline about post-surgery options for vision. It’s a long complicated set of parameters, but it can be summarized fairly simply. Most of what controls how well you see is basic physics of light refraction and angles.

  1. Your best option to focus light on the back of your eye is your natural lens. It’s at the perfect distance to do that. Consider it a 10 on a scale of 10, if it’s an option. But Jacob’s lens, like all kids with cataracts, had to be removed. 
  2. The next best option is probably an inter-ocular lens, a permanent implant. Probably an 9/10 rating because it comes as close as possible to the same location as the natural lens. But IOLs are permanent and lock in a specific prescription, so better to wait as long as possible to do that surgery. Some countries do it earlier, most of Canada recommends age 7+ unless there are other issues.
  3. The third option is contact lenses, and based on physics, probably an 8/10 rating. It sits right on top of where the lens was, so only off by parts of a millimeter. The challenge of course is insertion and removal, particularly for those who can’t do it themselves. Choices abound for styles, etc., but basically come down to hard or soft, with soft ones generally healthier for the eyes. More permeable, more light, less rigid, better able to fit to the eye in most cases.
  4. The fourth option is glasses, but that’s a good cm away from the lens, and the farther away, the thicker the lens needs to be to focus and direct the light to the back of the eye. It means more aggressive physics of light, and probably a 6/10 rating. Ease of use is the obvious benefit, but you don’t see as well. Most of your peripheral vision can be lost with aphakic glasses.
  5. Finally, you can also do nothing. A part of my soul dies just thinking about this option, but for some kids around the world, it’s the only option. Some can’t even have the surgery, due to cost, or sometimes just because it isn’t diagnosed early. The bottomline is if the eye and brain don’t learn to work together in the first two years, optimal seeing isn’t even an option anymore. Lots of kids who are adopted from abroad come with medical issues, and cataracts are common. Jacob won the birth lottery in many ways, as most of his issues would have either resulted in early death or ongoing blindness in some countries. A reality check sometimes.

So the natural lens option was gone. IOLs were a distant possibility. He would have glasses to wear when he didn’t have his contacts in, but contacts would be the main tool to help his brain learn to see. So we would have to insert contacts. In a baby.

And yes, that is about as horrible as it sounds. Jacob’s eyes were relatively normal, and so he could wear SilSoft lenses. Some aphakic kids have corneas so steep that they can’t wear SilSofts, or need too much correction for this option, but Jacob was right in the normal range. Some people put them in and leave them in for a week. The contact lenses were never designed for that, but when laser surgery took off, the industry lobbied governments to change approvals for long-term use (thus reducing the inconvenience factor). But for kids, removal is also healthier in general as it gives their eyes a chance to breathe. Plus, you do not want to have to figure out how to remove a stuck lens from a baby’s eye. Daily removal it would be.

For me, it was a struggle. I have never had contacts, I could never have contacts. I freak out with just having long lashes that frequently irritate me. I have trouble even doing the puff of air test at the eye doctor, they can’t get it anywhere near my eye before it clenches shut. But the bottom-line was that Jacob needed the lenses to see and it wasn’t like he could do it himself yet. And regardless of whether it made me squeamish, or made Jacob cry like crazy, his brain needed his eyes to be working, which meant it was time to man up. 

We saw the ophthalmologist, he showed us how to insert them, easy peasy, five seconds, done. People online said it was “tricky but we all had to learn”. Not a good sign that they weren’t saying, “Oh, no problem.” One of the hardest parts can be getting the child to stay still, but we got a tip from an optometrist friend. He suggested using the carseat. Which we did. We would basically put Jacob in, strap him up, and the cub would be relatively stable while we did the insertion.

How did it go? We sucked at it.

If feeding was a challenge, contact lens insertion was a nightmare of epic proportions. Such a tiny lens, such a tiny eye opening. There are three basic methods for doing it…you can put it on your finger like most adults do, and place it in the eye head on. Alternatively, you can try and pinch it and drop it in the eye like a CD into a tray. Both methods require the eye to be wide open to get it in. The third choice was the one that worked for me. I pinched the bottom of the lens, making it like a fan. Then I pulled up the top lid, slid the contact under, lowered the lid to hold it in place, and then pulled down the bottom lid a bit to let the contact slide in, releasing the lid to close over the lens once the contact is lying flat.

I say it worked for me, but what I really should say is “eventually”. The doctor did it with clamps, had them in, set, less than five seconds. No muss, no fuss, Jacob wasn’t exactly happy, but it wasn’t traumatizing. Our first time doing it ourselves? Over an hour. Almost 40 minutes for each lens. It was beyond horrible. A horrible, no good, very bad day.

Jacob was screaming, we were crying. Separate from the soul-wrenching nature of torturing our son, it was beyond frustrating. So close, and then it would slide out. Or we would drop it and have to look for it (fortunately, rarely). Or it would dry out while we were trying. I felt like I was all thumbs. We would try for five minutes each or so and then switch. Eventually they went in. Day 1 accomplished. Only 2500 more days to go until he might be able to help. Removal proved relatively easy, a few seconds.

The online group and others suggested trying it when he was asleep, it would go in more easily, less likely to fuss while we did it. But we were torturing him, he wasn’t going to sleep through that. The first week, it was an hour or more each day to get them in. Andrea couldn’t get them in consistently, partly on technique and partly emotional pain, so the first month was mostly me. Week 2, it was down to 30 minutes. Week 3, it was down to 10-15. Week 4, it was down to five minutes. Andrea figured out how to do it while he was asleep in his carseat. Her and I had to try to insert the lens at different angles, but eventually we figured it out. It was never easy, but we could do it.

That first month, a piece of me felt like it died every day. I knew it was hurting him. Sure, he wouldn’t remember, but I would. Forever. I had to close myself off emotionally while I did it, just to keep trying each day. If I didn’t succeed, Jacob wouldn’t learn to see. It was that simple. No choice, no retreat, no surrender. So I would torture Jacob for up to an hour, then kiss them goodbye and head into work. Fun times.

Thriving

I don’t know how, but Jacob continued to thrive. All the poking, prodding, lens insertions, adjusted formulas, everything. He handled it well, and was overall a pretty good-natured baby. He developed bronchiolitis in October, and was given an inhaler to start using. He had a urinary tract infection, too, requiring another visit to CHEO emergency. Twice in one month, how fun is that? Of course, every time we had to do a mental dance — could it wait until the next morning and go to a clinic? Should we go to emergency? Was this something “normal” or was it an unique issue for Jacob?

Generally, he was just being a normal baby. Andrea took him to his first post- natal yoga class in October, and we took him home to Peterborough for another visit at Thanksgiving. I loved making him laugh, and I would make eating motions on his back and he would laugh and laugh.

I would have loved to take him to my mother’s 80th birthday in October too, but he and Andrea were sick at home. We did have some fun at Hallowe’en however. Our friend, V, had bought him a panda costume when she was traveling, and although it was pretty big for a five month old, we put it on him and drove him over to her place to trick or treat.

November started, and Jacob started grabbing things more. He got a Jolly jumper and he started bouncing in it, good exercise for his legs and torso. He loved jumping with support. He had his first playgroup, ate his first baby cereal (yum, yum!) and we dressed him up in a Santa outfit and took some pictures. Jacob was not too impressed with us — sure, we could stick things in his eyes, and he wouldn’t complain, but put him in a Santa suit, and it was game over.

https://polywogg.ca/pandafamily/upload/2018/02/03/20180203213613-4761b4b5.mp4
https://polywogg.ca/pandafamily/upload/2018/02/03/20180203213638-c53eda18.mp4
https://polywogg.ca/pandafamily/upload/2018/02/03/20180203213716-3fa096bc.mp4

I want to end this piece on a somewhat ambiguous note, because as we neared the six month mark, I was having real trouble articulating even to myself what we were going through. Andrea and I had our first experience at CHEO where they asked us a question that seemed like a compliment but was also a cynical moment.

We went through a lot with the medical establishment in that first six months. And so we frequently dealt with doctors and nurses who had never seen Jacob before. Which also meant giving his patient history quickly, efficiently, outlining the highlights. When we started, it was more like a brain dump. Then we would answer lots of questions. The same ones regularly. So we started adjusting our spiel, pre-empting some of the questions. By November, it kind of looked like this:

This is Jacob, now 5m and 2w old. He had PPROM at 26 weeks, bed rest for ten weeks with low fluids, and then a C-section delivery at 36w, 5d. He had pneumothorax procedures on both lungs in the first two days, was on light oxygen, but never intubated. He spent two weeks in the NICU, mostly with feeding issues. He had failure to thrive at 7w, but we switched him entirely to bottle and now formula, and he’s been steadily gaining weight. He has a herniated umbilical cord, no issues, and reflux. He had congenital bilateral cataracts that have been removed at 3m, went well, and now wears contacts.

The doctors would then pause, look at us, and ask us, “Do either of you have a medical background?”. Because we had just given the normal patient history for our son in the same way they would tell it to each other. We had used the right terms, and we identified the most significant aspect i.e. that he never needed intubation (a giant issue from the NICU time that I mentioned earlier that we hadn’t realized was a signal check for future care). We said “no, no medical background”, but we wanted to scream, “No, just a roller coaster for six months.” Like I said, a partial compliment we would have been just as happy not to be able to receive.

And that’s where I was, mentally. We had spent six months dealing with all of this, and there were times where we had to fight really hard not to treat Jacob like a patient, even to ourselves. When doctors and nurses came to see him, I would always introduce him. He wasn’t a number, he wasn’t just a patient. He was a special, amazing, wonderful little boy who needed some help from us. But I wanted them to see Jacob, not just treat him.

It was equally hard for Andrea and I as a couple too. We spent so much time in that first six months talking about medical stuff. It was constant. Relentless even. Some days it seemed like we’d never discussed anything else. I’d come home some nights wondering what holy hell I was about to enter. I’d brace for a smack, and found it difficult to relax and enjoy things even when there wasn’t one that night. I was having trouble not feeling guilty too. So much of it was falling on Andrea because she was home with him, and because of our neighborhood setup, a little isolated too. I at least had a break of going to work and focusing on something else for awhile.

Separate from our individual side, our relationship suffered too. I know that divorce rates for parents of special needs kids are incredibly high, and while Jacob’s needs pale in comparison to some, I could see easily how a relationship could be stretched past the breaking point. It was an incredibly stressful time, sure, but we also spent what seemed like every waking moment talking about Jacob, and most of it wasn’t the fun stuff of what noise he made today or how big a diaper change had been.

Plus, every decision seemed momentous. Even when we agreed, we still had to make the decisions jointly on issues with a lot of grey area. And not the normal entry-level parenting stuff, but acute issues related to medical questions. I felt at times that we got put in a graduate-level parenting program, with no undergrad to ground us. We had to lean on each other, and we got through it together, but it stretched our relationship pretty far. Less compatible people would likely have snapped and divorced. It was easy to see how that would happen. Either through mutual separation or one parent not being able to take anymore and booking.

The day we found out about Jacob’s need for surgery was my worst day. When I had to tell Andrea to stop talking, stop telling me the news for a bit, I was close to needing a rubber room. I felt like my head was going to explode, like whatever I had inside of me that was “me” was nearly gone, I had nothing left. It didn’t last long, maybe 15 minutes, but it was a fine line between normalcy and just completely breaking down.

Mostly though, my ongoing challenge was struggling mightily with how to articulate my concern that we not see Jacob as a patient. That we not treat him as one. That we focus on the normal as much as possible, that we shift the balance to regular parenting issues. And then I had a small epiphany, courtesy of the aphakic group. One of the mothers on the group (and yes, I was one of the few men in the group and practically the only one who would post regularly) posted about her daughter and the issues she had been having over the last few years. I tried to articulate my fear, and the woman got it immediately. She said, “Yes, I try to remind myself that 98% is just her being a kid, and the other 2% is this eye issue.”

What a concept. A beautifully articulated phrase. Jacob was 98% little boy, and 2% other medical things. Yes, that was what I was trying to articulate. But we were spending so much time managing the 2%, I feared we were missing celebrating and enjoying the 98%. I feared we were treating a patient, not playing with the little boy.

But that could be changed. Jacob’s 2% was stable, finally. It was time to fully enjoy and embrace the 98% as often as we could without worrying the 2% would take him away from us. And with that epiphany, I felt like I could breathe again.

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Posted in Family, To Be Updated | Tagged fatherhood, Jacob, kids, NICU, parenting, personal, wife | Leave a reply

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