Very rarely do I loose my mind in the face of a medical crisis or intervention in regards to my daughter and her long term seemingly progressive disease.
Today was one of those days where I lost it. I mean, I completely utterly lost ‘it’.
I was in a meeting to discuss where we are at, what support my daughter needed and what we may need moving forward to ensure she could be her ‘best self’. Best self being happy, pain free, active, social, and full of curiosity and joy (a staple in Sophia’s personality).
We have been in ICU for over a week for what was diagnosed as the onset of respiratory failure. Yes, respiratory failure…Sophia now requires non invasive ventilation (bipap) which will breathe for her by pushing positive air into her lungs using a machine.
It was and still is disconcerting. Despite the best of theories and an MRI, no one can really identify why Sophia’s brain decides to stop sending the signal to breathe…and on top of that, she has presented with some physical changes and what looks like issues with swallowing. Sophia has barely eaten since last week and when she does she has this little throat clearing cough that is apparently the bodies way of moving the food through her throat into the right area. The risk is choking or aspirating (food entering her lungs), something we haven’t experienced, yet, knock on wood.
Yes, it’s a lot…
Thus the importance of the meeting to really discuss where we are at and how we would like to move through this next stage. Or at least, that is what I anticipated.
Instead, I was met with professional opinions that not only came across priggish but worse…they completely trivialized the horrendous journey that Sophia has been on for the better part of a year and a half never mind the life long fourteen years. The specialists contradicted their own observations and initial conversations with us and I felt bullied down an opinion that I still, fervently, disagree with.
It is moments like this that I feel overwhelmed. It isn’t from caring for a daughter with a life threatening, life limiting disease. It isn’t the sleepless nights, or days of organizing a plethora of medical equipment, medication, appointments, therapies. It isn’t the worry.
I am overwhelmed with disappointment in those we trusted, I am overwhelmed with emotions that waffle between anger and utter helplessness. I am overwhelmed in the lack of acknowledgement of my daughter’s suffering and overwhelmed with the abysmal lack of compassion that exists towards children like mine by professionals like these on a regular basis.
I have been a good advocate for my daughter. There is not one person in this world that would disagree that I have done nothing but provided Sophia with the best care, the best resources for support, the best environment to be her best self.
Continuing this ignorant pretense is killing her softly…and unless someone in the realm of this professional medical environment starts to stand next to us, self effacing and help carry Sophia through this vortex of a disease she has, that is exactly what will happen. I have no doubt…
And I know, there is a long line up of parents and children with rare, complex disease process behind us who share in my frustrations. And who like me, are tired…
So yea, I lost it today…big surprise.