I write this as I sit on the cold tiles of my kitchen, the coolness keeping my pain at bay long enough to allow my mind to think of something aside from the pain, wondering what my children have done to deserve this current situation.
Through no fault of their own, their mother has turned into a dragon, someone they have never met, and someone I wished they never had to meet. I lay in bed purring with relief from pain medication one minute and the next growling fiercely, as though protecting eggs in my nest. No real justifiable reasoning for my outbursts. I hold my tongue each day that I can. I try not to burden my three young children of what it feels like being on fire every moment, but when I reach my limit, I explode.
I can vividly remember one day looking at the off-centered lean of colorful plastic cups in the cupboard and how it broke me. It’s not that they didn’t put the cups away, they tried. It was the disorderly position, it just wasn’t to my liking apparently. So the dragon awoke and roared so loudly that I can still see the confusion in their eyes. The fear that I had caused. It wasn’t the cups, I couldn’t care less how they were stacked. Really, it wasn’t. It was the pain, constant pain just building up until I can no longer contain it.
I often hear them in their rooms quietly talking to one another (so they don’t wake the dragon), my eldest tries her best to explain to her two young brothers that mum just needs some space. How badly I want to call out to them and apologize. How scared I am that they won’t accept. I am forever sorry, forever failing. Hiding my pain from them until I break and lashing out from it all being too much.
Honesty can only get you so far with children. They cannot, nor should they be expected to, understand why I have changed. Why I cringe every time they reach out their little arms looking for a comforting embrace. Why I lay in bed most days watching their joy from afar, fearful that my participation will not only worsen my pain but lessen their fun. They present me with so many reasons why I need to take part, why this game is the perfect game for me. “Mama, you can sit down while we do it.” “Mama, we can come to sit in bed with you and play.” So generous of them to take my pain into consideration. Then there is always the dreaded, “You look okay today, though.” I probably do. Most days, I try so hard to put on a brave face for them, give them some form of normalcy.
Oh how I want to do all that they ask of me, and all that they deserve. I don’t want to be bedridden, missing out on their lives. I want to be a good mother who cooks them dinner, has tickle fights with them, and wipes away their tears. Instead, they wipe mine. They hand me tissues and lovingly whisper that everything will be okay. I want to lay on the rug making carpet angels with them, and I want to run around the back yard kicking the ball.
Mostly, I want to hold my children and not feel as though I am hugging a bed of nails. I want my smile to be real, and my embrace to feel safe. I know they can feel it, Mums hug just isn’t the same, it’s just not as tight as it used to be. Loving them so much hurts when I know that they have the short end of the straw.
I am far from the parent I had once dreamt I would be. Imagine needing to ask your children to do up your shoelaces or even cut your chicken for dinner because that night, your arms didn’t want to work. The embarrassment you feel having their friends over knowing your house is not as tidy as theirs and the fear that one day your child will know.
They will know that I am not good enough.
Monica Jane is a mother with a debilitating chronic pain condition navigating through helping herself and her three children. One of which has ASD, another in the process of receiving a diagnosis of an autoimmune disease and her third child who can at times seem forgotten but is loved just as much.