When someone is grieving it implies that they have lost something. They're in mourning. They're trying to adjust to their new world and desperately trying to determine if they will ever find a place in it again.
Despite not physically losing anything or anyone, the grief experienced by parents whose children have special needs or are unwell is one of the same. It's very real, it's very present and it's very intense.
I spent so long getting excited about what life was going to be like with my new little sproglet. Oh the adventures we were going to have and memories we were going to make. But, it didn't go to plan and there's absolutely nothing I could do about it. I realised, that what I had spent months and months planning, was in fact, nothing but an attractive infatuation.
I have the tendency to shut off during difficult and painful times, to go through the motions and simply just make it to the end of one day and onto the next. But, when I actually took a moment to stop and acknowledge the prognosis I had been given for my child, the reality of what my future life was actually going to be like came crashing down and brought me down with it.
I suddenly had the stark realisation that I was not in control of anything, at all. My world could crumble at any given moment and there was absolutely nothing I could do about it. After time, once the shock dissolved a little, I began to grieve.
I couldn't avoid it, I couldn't hide from it and I couldn't escape it. It crept up on me; it was consuming and maddening. It was bizarre how deadened I felt by grief, when in all honesty, all I had lost was an ideal of what should have been. I was completely numb.
People say grief gets easier over time. It doesn't. You just get used to it. It becomes 'normal', and when something is normal it isn't shocking or alarming. It's mundane, it's your 'everyday'. It doesn't mean that it's easier to cope with or that it hurts any less. It just means that you have learnt to bury it to get through the day. And late at night when there's nothing but a dark room, silence and emptiness, it surfaces and consumes you once again.
Time doesn't subside or make dealing with grief any easier. All time does is create a distance. A distance from the initial impact of discovering terrible news and where you are along your journey now.
Ultimately I knew, I had always known; despite trying to convince myself that my son was just a 'bit behind' for the umpteenth time. However, there's still a part of me that hopes. That hopes that I'll wake up one day to him having unexpectedly discovered the ability to do everything we've been told he probably won't. If you believe and want something enough it will happen, won't it? That's how it works, right?
Hope is a dangerous medicine. In small doses hope is good; in fact it's great. It brings optimism to the darkest of hours and makes the world seem a little less desolate. Hope is infectious and it doesn't take long before it affects those around you. Before you know it, you're hopeful, those around you are hopeful and you've overdosed. That energy and those hopes keep building upon one another to inevitably create a complete delusion of what your future life could be like. Hope helps us to regain the control that grief so swiftly stole from us, but it's easy to let it control you.
Hope and grief are as dangerous as each other. An equal balance of the two is imperative. Too much of one and you can deteriorate into despair and depression. Too much of the other and you're living in a fantasy.
Nevertheless, grief always prevails. My false hopes come plummeting down each time as quickly and as violently as the realisation of having an unwell baby hit me the first time.
Realistically all I have lost, all that I am grieving, is an ideal. As hard as it is to come to terms with, the adventures and 'soon to be' memories were all in my head.
I can't fight it and I can't change it. So, I've learned to embrace it.
To embrace every moment of it. I'm taking the good with the bad. Because if I don't, the alternative is far bleaker. We're going to have a wonderful life and we're going to make new memories and have different adventures. They may involve a wheelchair, they may involve an incontinent 10 year old, they may involve a non-verbal child.
They may not.
They may involve a walking aid or stick, they may involve a perfectly toilet trained 10 year old or an extremely verbal child who we can't get a word in edgeways over.
The bottom line is that we don't know. We can't control anything. Nothing in this world is guaranteed. So whilst we can grieve, it's important not to give up hope, but to also remember to keep our hopes in line with reality.
My son is a carefully constructed composition of chaos and I'm slowly learning that I wouldn't have him any other way.
Anything is possible.