I woke early this morning, before my boys which is very unusual. I laid there watching my little man sleeping. His little face twitching in sinc with his dreams and his eyes, closed and moving underneath his eyelids. It's so nice to hear him breathing a little clearer than he has been and I hope that means he is finally at the end of this virus. My other little man however is not and its just begun for him so he's struggling. But give me a cold or flu any day over what we've been exposed to as a family. A broken leg, a nasty graze, tonsillitis, anything over cancer. What I wouldn't have given for the hospital to have given us a simple diagnosis such as those in March last year and sent us home.
Obviously that wasn't to be the case but every time I hear of someone going to the emergency department and then being sent home with their child with something simple I have a huge twinge of envy. I'm happy for them, obviously, but so wish it had of been us. People often tell me their stories of their time at PMH in an attempt to let me know they had a small idea of what it must have been like for us but that they couldn't imagine what it would be like to have our diagnosis. I appreciate their efforts, no doubt about that. Efforts to try to understand our situation and in a big way glad they can't understand it as its not a nice place to be.
I feel like I'm dribbling on now and often wonder why I'm writing this blog still. I know it's a useful way for me to vent and a resource that has put me in contact with many mothers living this same nightmare not to mention the wonderful people who I've met and the amazing support we have received.
Lately though I've been trying really hard to focus on Jayden and us like I normally would but my thoughts are with Harvey's mum as well. No matter what I write it feels unfair. That she no longer can write about her son and I can. That it must be crushing for her to get up in the morning let alone get through the day. I struggle, and my son is with me.
I know that life goes on as it has too and I remember how harsh that reality was after my mum passed so i cannot even imagine what that reality is for her or for any mother who loses their child.
That everything continues as per normal for everyone and yours has stopped, suddenly changed so dramatically and so finally. I think of her and I'm so sad for her and so very scared of being in her shoes.
Everyday I'm aware of how lucky I am to get that day with my son, with all my children and I appreciate it to no end. Every parent who goes through this knows that. They know that life is precious, every second of it and they know that bad things happen. When I said goodbye to my daughter as she left for camp on Monday I found myself really anxious about her leaving, even asking the teacher to be sure to take care of her and having an incredible urge to grab him by the arms and shake the words into him. I felt really worried something bad might happen and I had to talk myself out of the scared thoughts I was allowing to enter my mind. But I can't help but feel sometimes because I know bad things happen , that a bad thing could happen again. If I wasn't already overprotective of my children before this nightmare I am now officially 100 times worse.
So I'm thinking of my friend as I have been a lot and truly wish things were different. I hate that this happens to families and I hate the thought of mothers out there suffering from the loss of their child. I hate it because I know how much it hurts just the thought of it. It's truly not fair.
I went to my psychologist today, it's the second time I've been. I like her. Finally someone I can truly feel comfortable with. The first visit I spent the majority of it crying, like I had an enormous amount of stuff to get out. This time I was able to speak more and cry a little less. I know it's not a quick fix, nothing is and I feel like I shouldn't be so damn scared, worried, sad and overwhelmed when my friend has so much more to deal with.
I know my feelings are real and validated but so often I feel like a nutcase. That I should be coping better that surely by now I would have found someway to deal with this new "normal" that we live.
When I spoke with the woman today I asked her this very question. She said to me that I am grieving, that there is a term for it and that my grief is known as Ambiguous grief. Its similar to post traumatic stress disorder i read on the internet but treated differently. She said "you are grieving for the loss of so many things in your life. The health of your son, the future you once had for him, the future you once had for your family, your dreams, and the life your family once had". I said "but it feels like there is no end to it". She said "that's because there isn't, there is no end and everything you are feeling is normal and healthy. you are doing the right things, Leisl".
I sat there with tears in my eyes and was weirdly relieved to have a term put to my madness. It didn't take it away but at least now I know it's normal and its ok. Of course I know that i have valid reasons to feel so sad and scared and many mothers in my shoes have told me that they feel the same way but it was good to hear a term for it and that it was "normal".
she went on to say " this type of grief has no end but if you were to lose your son and I'm not saying that wont be extremely painful and far worse than the feelings you have now but with time, a long time, there would be an end to that type of grief, closure."
So now I sit here thinking about my friend, her grief, that I know without being told today, how devastatingly painful that must be. My greatest fear. And i know that the pain i feel today, may be hard, that the knowledge of the possibility of losing my son is devastating but for her she is living it. She may get closure one day and even that I doubt, as i don't see how a mother could live long enough to overcome the loss of her child. I wish that I could change it for all of us. That we never had to travel this journey and know that in order to reach the end of it, is to enter a world of pain. It's so very wrong.