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Being a Parent/Caregiver: Patience, Compassion and Guilt

02/20/2014 11:08 am ET | Updated Apr 22, 2014

How did I let down my child? What did I do wrong? How do I heal him? Why can't I stop his pain? These are some of the questions my wife and I ask as the parents of a chronically-ill son. The unnatural role of going from nurturer to nurse is unsettling and taxing on the most loving parent-child relationship.

I lay in bed many night unable to fall asleep until 3 a.m. because I am worried about our son. By then, my wife has usually given in to emotional and physical exhaustion, but throughout each day, she torments herself with the same futile questions. I suspect that for moms, the sense of guilt concerning their child's condition is magnified by a perceived responsibility that dads can only pretend to understand. After all, the teenager suffering in the next room is that child she carried and nursed and held. There's a reason a child in distress calls out for their mommy. The profound sadness I feel for my boy must only vaguely approach his mom's distress and fears. It doesn't matter that he is 16 and is now the tallest and most physically imposing member of our family. He is still our baby, eight and 11 years younger than his two sisters, respectively.

A friend told me once that a parent is only as happy as their least happy child. When one of your kids is battling a chronic, debilitating disease, the limitations on that happiness becomes abundantly clear. Don't misunderstand me. We are blessed in many ways and we share much love and laughter. There is a great deal for which we are thankful. Still, those moments are tempered with the reality that our son is in constant pain, caused by an insidious neuropathy caused by CRPS, for which there is neither a definitive treatment nor cure.

The condition has robbed him of his adolescence and claimed all of his teen years so far. Friendships and memories have been missed because of months absent from school. He spent years at home in his room, feeling captive to a pain that renders walking and even resting excruciatingly painful. Boyhood crushes and first romances have been deferred. Making things worse for him is the frustrating invisibility of his condition to even a trained observer. He likens the burning pain to acid or fire against his foot. Ironically, the condition makes his foot noticeably cold to the touch, yet it looks remarkably normal.

His mom's role has shifted subtly but significantly from monitoring his homework and activities to administering medication and chauffeuring him to daily doctor appointments. It is a role she undertakes without hesitation but it is unnatural to blend being a parent and caregiver; unnatural and profoundly sad. As parents, we share hopes and dreams that our children will run farther, reach higher and achieve more than we did. We have these same dreams for our son with a single additional wish that trumps them all. We want him to get well.

Last night, around 1 a.m., I checked my son, as I often do. He had just screamed in pain, so I knew that he was awake. He towers over me but when I knelt down and gently kissed his temple, he was still my little boy. His voice is deeper than mine but he greeted me softly with a familiar and tender, "Hi Daddy." I whispered in his ear how sorry I am that he is in pain and I promised that his mom and I will get him better. We intend to do everything possible to keep that promise to our son.

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