Advocacy

When medical error occurs transparency within the medical community is essential in the processing of grief and trauma for the patients, the victims and their families.  Without transparency grief and healing are suppressed by questions and confusion.  Clarity is required to assist in grief…unanswered questions and avoidance perpetuate ambivalence.  Honesty is critical.  Communication is key between medical professionals and patients.  Face to face honest communication is necessary.

After losing my one month old infant to severe cerebral palsy, resulting from error.  After losing my health and nearly my life after several lapses and delays in managing my deteriorating health status, I have learned.  Use your voice.  Speak up…speak out ……SPEAK.  Keep going until you are heard.  Listen to your gut, listen to yourself.  No self-doubt when it comes to your health.

In one month I birthed a beautiful daughter……she was resuscitated back to the worst cerebral palsy any doctor had seen.  She died again…at Canuck Place… a beautiful children’s hospice, four weeks later.  She was born with a severe disability.  She suffered, she had no voice.  I was her voice.  I regret no one heard.

In one month I experienced…… my own near death, having a child with a diagnosis of a severe disability, losing my health, infections, illness, navigating a palliative baby, pain, trauma, grief, loss and death.

My Voice

There used to be a hesitation to speak……to speak up, to speak out, to access and utilize this tool.  Yes, my voice it is a tool and it encompasses power.  There has been too many occasions where I have been muted.  But, I will continue and persist.  My voice is an extension of my soul.  It is a slice of what I am and who I am.  It is a gift.  I know.  I almost lost my voice when my life was on the brink of that balance.  What have I learned?  It is what matters and it is what can make a difference and drive change.  Your VOICE.  I contemplate obsessively, what if?  I spoke up louder, shouted……would they have listened.  Would my Baby Ireland still be here?  I know I questioned and voiced my concerns, but was I too soft, nice, polite.  Should I have been stronger in my weak state.  Those moments were precious.  They required a voice…a strong one, a capable one.  Would this have made a difference?  Would she be here.  She had no voice.  I was her voice.

What now?

I speak up, I voice my concerns, I pick and choose what requires me to access this tool.  I tap into it…quickly without hesitation.  Because, to look back with regret is the most daunting feeling particularly in life and death.  I survived, Ireland did not.  I value my voice and the capability of it.  The difference it can make.  Without it, there is no change, growth or movement.