By: Maggie Murray
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 genuine, 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 realized, that what I had spent months and months planning, was in fact, nothing but an attractive infatuation.
I tend to shut off during difficult and painful times, to go through the motions and only just make it to the end of one day and onto the next. But, when I took a moment to stop and acknowledge the prognosis I had been given for my child, the reality of what my future life was going to be like came crashing down and brought me down with it.
I suddenly had the stark realization 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. Over 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 idea 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 ‘every day.’ It doesn’t mean that it’s easier to cope with or that it hurts any less. It just means that you have learned 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 more comfortable. All time does is create distance. 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 Oliver 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 excellent. 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 your future not based in reality. 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 realization of having a sick 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 include an incontinent 10-year-old, they may consist of a non-verbal child.
They may not.
They may involve a walker or a cane; they may include a perfect toilet trained ten years 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 while we can grieve, it’s important not to give up hope, but to also remember to keep our expectations 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.
Maggie and Craig are parents to Oliver who was born in 2016. Oliver has numerous complex medical issues which have altered their parenting journey considerably. Maggie hopes to connect with other families in the special needs community by blogging. Ultimately, her goal is to raise awareness of the daily struggles that families face with special needs and medically complex children. You can also find Maggie’s blog posts at Huffington Post UK.