The tapestry of the life of a medically complex family

Community is a word with many definitions across similar relationships. In the past, and in today’s dictionary ( ), the list always begins with definitions which include a common location or a common religious belief system. Late in the list, about definition 8 of 9, is the description that I think will one day head the list:

8. similar character; agreement; identity: community of interests.

My community has little to do with where the building in which I live is located. I know how some of my community members express their beliefs religiously or universally, but it is not common across each of us. I find community in families and individuals who share my life experiences, views on humanity, and commonality of challenges with which we are faced each day. My community is the group of families & individuals throughout the world that face the challenges of caring for an individual with special medical and/or developmental needs. Each day we face includes supporting each other through the ups and downs of the health status of the child or other family member, the variability of ability we see relative to this roller coaster, and our own fatigue from supporting and caretaking. We spend life walking in the shadows of major medical centers, avoiding the situations we know can put our family member in jeopardy, celebrating today’s health while preparing for the next hurdle- like a track meet, there are always hurdles.

My community is one that is powerful in its strength to support each other. They are present to provide information to those beginning the journey. They listen when things are challenging to another member of the community. They commiserate when someone has a bad day, recommend strategies to make the next day better, share virtual hugs and imaginary chocolate- using the language of the community of old to describe their wish to support each other. They hear and respond.

My community is one that frequently suffers great loss together. When a child or family member becomes sick, struggling to continue, nearing the end of this journey on earth, my community rallies. Words of encouragement are posted on social networking sites, medical condition boards, virtual and postal cards are sent. There is no hour that goes by that we don’t reach out to each other, letting everyone know, asking everyone to pray or connect with the energy of the universe in the way that makes sense to their beliefs. Our community is inhabited by a great number of angels, of spirits beyond, of people who we have loved who have journeyed to the light. We grieve each loss together, provide the support we are able, and celebrate the life of the person with worldwide balloon releases, bubble-blowing, changing of  “profile pictures”, words of encouragement for those who remain.

I believe we are truly living in a time where the definition of community as co-location & shared beliefs is nearing obsolescence.  My community is limited by no political border, no race, no color nor creed. My community is more open, more inclusive, more “come unity” that I have chosen. It is the coming to unity of experiences that sustains us as members of a community for each other.


Comments on: "Community: to come to unity by shared experience" (1)

  1. […] medical life, a family comes across others facing similar challenges and bonds with them over the shared experiences. The community formed is one of mutual respect and support, of celebrating the little triumphs each […]

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