In just a few weeks, an absolutely horrifying 12 months will end. Our very own annus horribilis. It didn’t seem it would be a year of pain, but it started with a kid in hospital and will end with the end of a forever relationship that looked like it would last, well, forever.
On November 9th last year, my son had to be taken to emerg. It was the 2nd time in 2021 that he was in an ER. There were a lot of guesses about what led him to being there. It wasn’t until earlier this year, after begging doctors to do a routine test, an ultrasound, that it was revealed what was bothering Daniel–his gallbladder had to come out.
Being non-verbal, having limited mastery of his AAC, and losing what speech he had, meant we had no way to understand what he was trying to tell us. His pain response isn’t to say “ouch.” It is a complicated set of behaviours that aren’t connected even to where he is feeling pain, as we now understand it.
When he came out of the hospital, we could see the boy we knew before pain ruled him. Being a teenager, he didn’t like the idea of taking it easy and was rough on this stitches. He had an up and down summer, while we tried to figure out how to make sure this 6’4″ kid ate on a schedule that didn’t create more pain and also didn’t make him go hungry.
The gallbladder surgery is just one physical health issue that Daniel faced. The hospital and ambulance were traumatizing for him and the challenge is to get him in for more tests to see what else is up.
Even something as simple as going to the dentist takes almost military-level planning to keep him comfortable.
In all of that time from last November until today, I have spent 7 days away from Daniel and that was when he was in the hospital in April. Oddly, fighting with doctors at the hospital and then coming home to fight with them some more on the phone is not the relaxing vacation one might expect.
For a while, it was possible to go out for walks or do some errands with Deanne watching all of our kids. As Daniel became more disregulated between November and April, it became clear that Daniel and I were going to be inseparable. There was no respite available and no money for respite. When Daniel slept, that. increasingly, became my respite. If Daniel didn’t have a good night, neither did I. The other part of the story is that Daniel had not been in school fulltime since last October. He was able to return this September, but only on short days so far to reintegrate him
It felt like I was doing this alone for months and I now know I was. For months it has been that I could not leave the house without Daniel. As separation takes hold, nothing, effectively will change unless respite can be secured and he is in school fulltime.
I have an internal wishlist of what would make me better able to recharge my batteries. First on the list is respite, second is getting a two hour nap in the day. That’s where I am at.
The last year has shaken my belief that I am doing the best for my kids while doing everything I can to find support for Daniel. That feeling takes a toll on a relationship when previously Daniel has only been here for a few days at a time–a week at a time at most–over 4 1/2 years.
None of this is Daniel’s fault. It’s a lot about what supports are available for kids with complex needs. Add in a pandemic, and there are even fewer supports. Then stir in two partners moving in very different directions and trying to deal with their own feelings of shifts in attention and energy in the house.
The path ahead is still very cloudy–who will live where, when do moves happen, is there a financial path to staying in our current house, when will the 2 days of respite (yes, 2 days per quarter) materialize, can we arrange another set of medical tests for Daniel while the healthcare systems seems so wobbly.
Early next year, the journal for members of CPSO will have an article that includes the medical response to Daniel’s healthcare journey. There is one anecdote from the last year that I hope makes it into the final copy.
After 2 days in the hospital last April, I received the morning phone call from the nurse to discuss Daniel’s night. She said they were ready to discharge Daniel and I asked if they had done the ultrasound and taken more blood yet. The answer was no, as I knew it would be. I told them that I was not picking Daniel up until they had done the tests to see if we could figure out what was going on, to answer why he was in the hospital for the 3rd time in just over a year.
The nurse then said they could do nothing more for him and I didn’t pick him up they would call CAS and tell them I had abandoned my son. I invited them to do that.
About 15 minutes after hanging up from that call, a doctor made the decision to start treating Daniel with pain meds and things started turning around.
That call, along with a few others, in the last year with Daniel, changed me, but it did not change my resolve to stand with Daniel and find out how to get him more help.