I consider myself an empathetic person. In fact, according to a common personality test, I'm an INFJ - Introvert, iNtuitive, Feeling, Judging. I place a lot of value in my ability to read people and understand where they are coming from. However, I have a very difficult time relating to and understanding parents with sick children.
Most of the "children" I take care of are 16 years or older. I have been consulted in these children for various infectious complications of their baseline situations. These children have brain injuries, special needs, and congenital defects. These parents remain very involved in their children's lives, even beyond the usual 18 years that define the normal years of parenthood. These parents have to make difficult decisions, sometimes knowing that their child's underlying condition (eg, Down Syndrome) will not improve. Most of these children are not capable of making decision on their own, so their parents have to determine whether or not to resuscitate their children if a heart stops or consent to a risky surgical procedure. In the instance of brain injuries, these were usually fully functioning children prior to their accident. These parents are very hopeful that their children will recover, even despite the dismal odds quoted to them.
I find myself pitying them, becoming angry with them, and ultimately resigning myself to their unfounded optimism. I have come to understand their feelings and their involvement, but I am as yet unable to empathize with the bond that a parent has with a child, especially a child with special needs or severe illness. I am lucky enough to be an aunt, which is a sort of surrogate marker to parenthood. I love my niece and nephew and would do anything for them, but it is a different bond than a parent has.
I have to constantly work to maintain my patience and understand that they probably won't believe that the statistics I mention will apply to their child. I will continue to try and give them the space and time necessary to process the situation, the information and hopefully realize the prognosis on their own. I know that some parents will maintain an eternal optimism, and some will succumb to the unfortunate reality that their child is bound for a place of no more suffering and no more pain. Hopefully their support network and their faith will help them transition from one extreme to the other.
Sunday, January 27, 2013
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