The tapestry of the life of a medically complex family

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by “everything”: they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906…]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.

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