20 weeks, 5 days part 2

Read part 1 here.

Armed with drops, an eye patch for sleeping, a follow up appointment with the specialist two days later and strict instructions we started on our way home.

Due to my crippling city driving anxiety we had parked our car at James’ aunt’s and walked to the train the day before. Yup. Walked. To the Train. As if I hadn’t felt guilty enough about that, gingerly leading my love through the city back the way we’d come had me wanting to curl up and sob right there in the street.

In the car, we had to recline his seat and James had to lie facing me for the trip. It was arduous. Every jolt had him groaning, increases in altitude put pressure on the bubble placed in his eye to keep the retina attached and, in my mind, I could see his eye busting over and over again.

Once home, life kept on. School, activities, commitments. They didn’t let up as James had to lie on his right side and recover. He would sit up for lunch and dinner and the rest of the time was spent on his side. He complained of his body hurting and about not being able to see. That very first week seemed such a long time as I cared for him and continued with life. I remember sighing and saying something like “one week down, five to go.”

10 days in, the bubble disappeared and there was so much relief, his recovery seemed to be on track and we just had to wait for the buckle to release for him to get a new prescription for glasses and contacts as it changed the shape of his eye. His specialist appointments were positive but draining, his mum would drive him to and from Sydney while I stayed home for the kids. Every day trip would see him return exhausted and it would take days for him to recover.

There were weird visual issues, flashes, darkening and, at the 8 week mark a blob. While we thought we were almost at the end of the road, it turned out we were only beginning.

The next specialist appointment meant another surgery as his retina had torn again. Left at home, I felt so scared and helpless. Guilty, of course, for again not being there when he returned from surgery and completely dumbfounded that it had happened again. When James asked why, he was told he was ‘just unlucky’.

At least he got a black eye the second time…

After the freedom and rush of having been able to start sitting up towards the end of those 8 weeks, it was back to lying on his right side. Back to utter exhaustion for simply being. Trying to see with one eye, his body recovering and stress really took a massive toll and he withdrew into himself.

So often, people would say to me it must be great having him home to help out and for company but it was nothing like that at all. All of his energy was spent recovering. He wasn’t allowed to sit up for any length of time, couldn’t lift anything heavy (Felix), couldn’t bend down, couldn’t get his eye wet, so many rules that needed to be followed if he wanted his best chance to regain his sight.

I wanted answers; how long would this new, longer lasting bubble take to go? Would his vision be saved? What were we supposed to do to stop it happening again? But there were none.

It was a day-by-day situation.

I was so terrified of another tear and desperate for him to get well that we started leaving the house early every day so he could sleep, we would play at the park before school and once the holidays rolled around we would go out and do things. I was exhausted and missing what he brought to our family, he was exhausted and frustrated and aching from spending his life on one side.

We were both reasonably grumpy.

Life spun on and 12 weeks after that second surgery we finally found ourselves looking at life returning to ‘normal’. The bubble was FINALLY gone and James was able to get his eyes tested for a new script.

I’d spent so long waiting for that light at the end of the tunnel and soon realised that normal was a long way off. Being up and about was exhausting for him after so long, the relief at him having his sight back to basically what it was wasn’t as calming as I had imagined as we still had to be so careful and the risk of a cataract had basically become a given after the second surgery to ‘when’ instead of ‘if’. Finally, though, he went back to work in December.

Only 20 weeks, 5 days after I begged him to stay home.

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