Easy days ahead I sang to Roki tonight, just a song that I have made up in the need to convince myself, him and everyone else that surely easy days must be ahead. He cried for two hours this afternoon as he suffered old familiar spasms that we had not seen so strong for a long time. The mirror of his early days was certainly around today, how easy it is to forget how far he has come when you watch the pain riddle him for no particular reason. Needless to say that I wasn’t coping to well with it all by the time Dave got home, giving up seemed like a very attractive option, one of those days where I wish that things could’ve been different, I wish that Roki’s life wasn’t so completely messed up, can he just get better now? Can he just have an easy day and be free of all the struggles he faces on a daily basis? So unfair. So unecessary. So wrong.
Lucky I read a blog from another mother on a similar journey. Turns out her day was much the same as mine. Losing it when you stub your toe on the special needs equipment that seem to clutter your house now, banging the timer extra hard when you hear it for the 50th time a day, throwing the suction device across the room in anger. Dave had to retrieve it from under the fridge. It was a good throw.
I also read a line that made me feel a lot better and reminded me again of the path that I am on.
The urge to give up will be strongest just before you succeed.
Surely there must be easy days ahead. I know my singing and those words brought comfort to Roki and I heard Dave humming it too in the kitchen while he slaved away at the pile of jobs awaiting him every day, 7 days a week, no break. Ruby came in for a cuddle as I sang. I hope that if we can somehow keep holding on to the easy days ahead that we will be ok, we will be ok.
It will make everything worth while, the begging, the asking for help, the hard work, the worry, the pain of seeing Roki suffer, the guilt of not spending time with Ruby and Dave, the endless wondering when will Roki be free. When the easy days are here, that’s when.
Easy days ahead my boy, easy days ahead. There are easy days ahead my boy I tell you easy days.