My subject haunts me. I cannot get it out of my head and I cannot resolve it. Possibly it is the reason I blog.
Do I blog about special needs, yes. However, my original motivation to blog was not the special needs by itself and the Carnival Ride it put us on. My motivation to blog was to communicate beyond my little family that special needs does indeed need support beyond the family. Why must I communicate this? I share our experiences because our community abandoned us. Perhaps, I thought in my naivety, I could now help those just outside some other special needs circle to understand this special needs status a little more thoroughly. Yes, certainly naive.
Maybe I simply do not understand Community.
I looked it up:
COMMUNITY com·mu·ni·ty: noun,often attributive\kə-ˈmyü-nə-tē\
1 : a unified body of individuals: as
b: the people with common interests living in a particular area; broadly: the area itself <the problems of a large community>
c: an interacting population of various kinds of individuals (as species) in a common location
d: a group of people with a common characteristic or interest living together within a larger society <a community of retired persons>
e: a group linked by a common policy
f: a body of persons or nations having a common history or common social, economic, and political interests <the international community>
g: a body of persons of common and especially professional interests scattered through a larger society <the academic community>
2 : society at large
3 a: joint ownership or participation <community of goods>
b: common character : likeness <community of interests>
d: a social state or condition
Pausing from my task, I discovered this video on my facebook page:
Did our community intend to abandon us? No, likely not.Like the squirrel there is a community just beyond reach… watching. And eventually one or two of the watchers step up and make a difference.
But the day happened. One day John and I were a couple with friends, careers, extended family, volunteerism, activities involving many more people beyond the two of us. The next day my healthy pregnancy ended with Riley suffering an in utero
Grade IV brain hemorrhage
. No neighbor was available to help me to the hospital as I knew I was in far too much pain to take myself. I took a taxi…. one very late, lost and English free taxi. John rushed to meet me while no one he worked with was available to pick up the slack and he continued to field emergency pages throughout our own emergency.
Where was our community?
Here we are perhaps 24 or more hours beyond the emergency c-section holding Riley for the very first time. It took a nurse 45 minutes to arrange all the tubes and wires to make this happen. I believe this to have been arount 3 am on Aug. 30, 2002. Santa Monica Hospital NICU
Our community was myself, John and now a very ill child.
That was our community and today we are four.
This is the community you trust and rely on. This is the community that will be there for each other regardless. We are not completely isolated, we do stretch a little beyond this especially with our mom’s around and it changes shape a little. This however does not change my feelings of abandonment.
Please forgive me reader if you are disturbed by my perception of community. My experience has brought me to this conviction. How do I move beyond this limitation and should I? Am I now capable of being part of a larger community? Is not this the reason I post this little niche blog? I am reaching out to a more extensive community, yet I reserve a complete picture. It is now clear to me that community is a blog subject that I must pursue and I hope that you will understand that this blog is also about the healing process. This is my attempt to be community for those other special needs families who need it as well.
I invite you to defend, argue or share your thoughts on community with me. This is my experience and I cannot present it as more than I believe it to be.
It’s A Mad World
We are all special…. by Stacie
Please visit Butterfly Dreams to view more submissions on Community. I do hope they are far more positive than mine.