Saturday, November 12, 2011

Quotable Quote

"The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so ready to enjoy with me the sunshine of my prosperity." 
        - Ulysses Grant 


Most of us can remember a time when friends were close, close enough in some cases to call family. As we grow older, that circle of friends gets smaller. Those of us with a child who is medically fragile, that circle nearly becomes non-existent. 

When you find yourself venturing on a journey of unknowns, with a diagnosis of a condition like hydranencephaly (complete with all of the doom and gloom of medical texts), you are in some of the darkest days you will ever be faced with. Understandably, friends are not sure how to act, what to say, what to do, and simply separate themselves from a situation that is uncomfortable. We as parents, unfortunately, do not have that option... we have to be a parent and learn things as we go. The best friends are the ones that were there before, during, and are still here after. They are the ones that are just like you, not sure how to act or what to say or what to do, but they hold you up and walk with you along the journey.

1 comment:

  1. Well said!

    People often assume also that if we have family members nearby, that they are our support system, at least in part. This is very often not the case. In fact, the needs of Children who are Medically Fragile can create divides, rifts, and undue stress on families when extended family members are less than supportive or even confrontational.

    Some Special Needs Families/Families of the Medically Complex simply have no access any longer, no time for their former friends, social life, family visits...and may even be blamed for being the ones who've lost touch.

    Relationships can be complicated enough, but mix in Special Needs &/or Medical Complexity or Fragility and all the dynamics change...in an instant!

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