"Longer would have been nicer" Guest Post by Anne Williams

 

You don’t grow up expecting your younger brother to die, even when you’re told to expect it. You don’t live your life waiting for the grief. You just live.

I was only three and a half when James was born, I already had one brother, so was fairly disgusted with my parents for handing me another. I told them they had to name him Oscar, as in Oscar the Grouch, because I was mad.

Six months later I remember my dad rushing up from the basement playroom with a blue baby, and then nothing. James lived in ICU for six months, ultimately being diagnosed with a disease that affects around 1400 people globally. Doctors had no idea what his life expectancy would be.

Most of our childhood looked pretty normal. We have all the Hallmark memories: vacations, holidays, first day of school, last day of school, camping trips, family dinners. There were a few weird hiccups along the way, like what school bus James would ride. The school wanted him on the “short bus” when Adam and I rode the “regular bus” all from the same house to the same school.

James decided he wanted to play football. Fine, consult with a few doctors, add one extra piece of padding, off he goes. Looking at him, middle school, on, no one would have guessed he had a chronic illness with more questions than answers attached to it.

They were always there – those questions. Most days I didn’t think about them. I’m not sure if anyone who knew James did. 

Maybe that was the problem. He didn’t look sick, not sick enough to die.

Just because you knew the question was there, didn’t make James’ death any easier. Especially since it was pretty much out of the blue – fine when he went to bed, didn’t wake up. Throughout his life there had been times when he had been so much more obviously sick, where we waited, where doctors fought to bring him back… no one expected him to die in his sleep.

James was 39 when he died. Lots of folks, including me, have said it was a blessing to have him as long as we did. Which is one of those crap answers people give to people who are grieving when they don’t know what else to say. It makes me mad that I’ve said it, but sometimes it’s a great way to get other people to stop asking about James and his death. It makes me mad because it’s not really true. Longer would have been nicer.

12 years old

Summer 2021