The burden of hidden wounds

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What some may see is a strong woman, a momma bear who fights the biggest of beasts in the bloodiest of battles to defend her ailing cub. Proud, fiercely protective, a sacrificing mother who gives more than she has to give.

But what they don’t see are the hidden wounds.

They don’t see me shaking uncontrollably as an anxiety attack sets in and I struggle to steady my breath – and my racing mind which delves into the darkness too often.

They don’t see me standing over my son’s bed with my head collapsed upon his thin, fragile chest, as I let out years of pain in a deluge of tears that betray my soul’s deepest pain.

And what they don’t see are my son’s hidden wounds.

Beneath his lovely, soft skin are bones riddled with osteoporosis and scoliosis, leaving him frail, fragile, twisted and now with pain.

Behind those amazing, smiling eyes is a brain severely damaged that betrays him daily with uncontrolled seizures which could easily end his life on any given day.

Under his comfortable cotton tracksuit bottoms hides a wound that has once again broken through to leave raw, bleeding skin which comes with increasing difficulty in healing and a high risk of infection. A pressure sore which indicates a new level of palliative care. A pressure sore which has now left him, once again, bedridden until it heals.

Bedridden, which leaves me housebound.
Housebound without even a walk to help clear my mind. 

The other day I had someone I’ve known since I was a little girl tell me they HOPED I had a DNR for my Brendan Bjorn. How can someone hope a mother has a DNR for her son? Yes, in fact I do, but to say hope? To me, the meaning behind the word hope in this context is that this precious boy, this boy who is one of two whom my world revolves around, would be better off not living. And it isn’t the first time I’ve heard similar thoughts. I’ve been told by someone very close to me that Brendan Bjorn has no quality of life so when the day comes that I lose him, sure won’t it really be better for him and for me? A dagger through my heart is the visual that enters my head at that statement. Even more pointedly, I have been told (time and time again, by some government officials and by those I personally know) that my first born child, this angel, is a burden…a burden on the State, a burden on me in regards to my personal and professional life, that simply put, he is a burden all around.

No, he is NOT a burden. 

And I do not want to hear my son referred to as such again.

What IS a burden are these hidden wounds…

The hidden wounds that are slowly taking his life away from him.
The hidden wounds that leave me, even as I write this very line, drenched in tears and fighting for peace of mind, body and spirit as depression, anxiety, and grief take hold.

What some may see is a strong woman, a momma bear who fights the biggest of beasts in the bloodiest of battles to defend her ailing cub. Proud, fiercely protective, a sacrificing mother who gives more than she has to give. But what they don’t see are the hidden wounds. And what they don’t comprehend is the weight of the burden that are those hidden wounds. 

BB in hospital May 18

 

One thought on “The burden of hidden wounds

  1. Louise

    Hi Tracy

    Yet again I am drawn to your blog. Your son is not a burden, however a pure beautiful boy.

    Sending you a hug and strength from across the water, for all you do from your unconditional heart xx

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