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.