The Patient is Understandably Impatient

 

*Update from the 10th floor*


From the windows of the 10th floor, I watch from above as the world continues to turn. People living their lives, I continue wishing against all odds my daughter was one of those people.

How do you help someone who is losing the desire to help themselves? How do you force someone to continue to fight when they have fought so hard, for so long, that the fight is all they can now remember. In healthcare, there can be no shortcuts. It is a long exhausting road. Today this is where we are.

A hospital is the last place any parent wants to be with their child. I want to see my daughter dressed like a princess, going off to her senior prom. I want to see her driving off while experiencing butterflies because she is finally driving. I want to watch her walk across a stage and be handed her diploma. Covid did not postpone these events in her life. POTS, EDS, and SMAS, have stolen these milestones from her past, her present and threaten the shreds of hope she has for a normal future. What Covid has stolen is the possibility of Chris here with us. Compounding all of this, today, we discovered there is most likely another illness to add to Jayde's list of medical dysfunctions. Another battle that our exhausted warrior needs to fight.

Jayde-Rhiannon is angry. She is scared - the patient is understandably becoming impatient. Though she knows she cannot, in her heart, a part of her wants me to allow, her to go home and give up. Throughout this entire journey, today has been the most difficult to witness and experience. I know it is not a pretty story. It is simply her reality. A reality I understand no one can fathom unless they have lived through it themselves.

 

This photo represents the best part of our day


 

 

 

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