This used to be a week I looked forward to

With my birthday on July 31st and Charlie’s on August 3rd, this was always a time of celebration, cupcakes, ice cream, presents and parties. I would begin planning weeks in advance. Charlie had some of the best parties a kid could ask for.

Now, if I feel anything at all, it is mostly a mixture of apprehension and dread.

With the help of my wonderful family, we are doing all we can to make the best of things. There will be moments of peace and contentment and even happiness, as was the case last night when we enjoyed a brilliant evening with my parents. Great conversation, G&Ts, fish and chips, and one of my all time favourite desserts, frozen chocolate mousse!

The catch is that everything we do is a conscious effort to distract ourselves from the undercurrent of our reality.  Charlie should have turned 18 this week.

As ever, happy birthday wishes will be gratefully received in the spirit in which they are shared. But “happy” is not an adjective that describes occasions like this anymore. No special day can escape the cloud of Charlie’s absence.

The thing about traumatic grief, as I am learning, is that it truly never goes away. We figure out how to manage it. We plan around it. But it is always there. And it is exhausting.

I reckon that this experience has given us an inkling of what it must be like to be James. As an autistic person with chronic pain, James has to constantly work to decode this neurotypical world while also managing his pain. If he goes out somewhere, he always needs a nap when he gets home because he is wiped out by the amount of energy it takes.

Similarly, constantly having to navigate our way around our grief can wipe us out. My family jokes that if sleeping were an Olympic sport, I would be a shoe in for gold. Truthfully, sleeping is my only respite from the pain. And living in pain is exhausting.

This is our new reality. It is hard. Nothing is as easy as it used to be. Every special day is bittersweet.

I think I’ll just go back to sleep now.