Grief

As I sit on the floor of my living room in the early hours of the morning enjoying my morning coffee, an ]overwhelming surge of grief passes through me, so strong and suffocating that I have to stifle a sob. This isn't the first time I have had these random bursts of grief. They are not triggered by any noticeable precipitating event. The emotion fills me and makes me feel like I am drowning in grief. They bring tears to my eyes and have often knocked me to the ground, clutching at my chest - struggling to breathe.

I close my eyes and take a deep breath and wait for the moment to be over. It doesn't take me long to compose myself and I sit back and take another sip of coffee. I shake my head, as if that resets my brain, and work at getting myself up and out the door to catch my morning train.

This grief that encompasses me is always present in the back of my mind. It is solely related to Noah's health. I am sure these attacks are not unique - anyone who has experienced any level of sadness so profound that it changes their life forever, will have these attacks...at least that is what I tell myself.

Noah's diagnosis was so unexpected, and so feared (given my personal history of working with this population), that the 24 hours we spent leading up to being admitted to the hospital are so ingrained in my mind that they give me nightmares. The moments spent holding Noah, as they performed an hour and a half echo, calling out each defect one by one, is enough to make me break into a cold sweat.

At the present, Noah is the picture of health. He is a tall, healthy looking boy with rosy cheeks and full hair. His size is so impressive that he looks older than he truly is. His speech is so astounding that he sounds older than he is - but in reality, he is just over 2.5 years old and is living with a chronic condition that will impact the rest of his life. Noah has many barriers to face in life - many of which I am not comfortable sharing - but he is such a healthy looking boy that you would easily forget that he was not "normal".

Nothing about his behaviour, energy or physical appearance would give away the true secret. It is for this reason that I often forget we have a sick child. We treat him as we would any child and I think because of this, the grief finds moments to take over my world and bring the startling reality to the forefront at the most random times: sometimes I am just running on the treadmill and I have to stop to take a moment; sometimes I find myself reading and my mind wanders; other times, like today, I am just having a quiet moment. It is enough to make you want to occupy your mind every moment of every day, just so this grief can't grab hold and drown you...of course, this is impossible.

As such, I find I have to accept this grief. The attacks seem to come more regularly as we approach his cardiology appointments - as I know that we have another surgery in the near future. It is the "when" that is unknown and that is causing a lot of my anxiety. I find talking to Keith helps a lot because he is so level-headed and realistic. He has his own moments where I find him sitting alone in our room on the edge of the bed, looking like his world has crumbled - but we are there for each other and find strength in this shared experience.

I try not to let my knowledge affect me too much but of course that is impossible. Knowledge is there, whether you want it to be or not. I try not to think about what it will be like to hold down a 3 year old Noah while the nurse pulls a chest tube out of his body, while he is conscious. I try not to think of the pain he will endure when they crack open his chest and sew his bones back together. Of course, I have seen this all first hand, a hundred times, and that makes it impossible to forget.

Of course, this grief and panic naturally spreads to my fears for our beautiful Layla - she is such a healthy looking baby, but I know first-hand how looks can be deceiving. Is she healthy? Sure...for now...but who is to say that won't change? I picture her going through a similar ordeal and it rocks me with emotion so great that I want to bury my head in the sand.

Writing this, I sound like I could benefit from a good therapist - and maybe I could. But this grief doesn't control me - they are just brief blips in my life. It is just part of being a mom to a chronically ill child. I am sure many people have the same sort of grief over something: a sick parent, the passing of a loved one, a frightening past....

I can only hope that in sharing my feelings that they will benefit others to know they aren't alone in their grief