Friday, June 24, 2011

Carnival Ride - Submission to "Butterfly Dreams" Disability Carnival Ride

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>
 c : social activity : fellowship
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.


Rebekah A. said...

Some of us have taken this very same bullet. Although I do not believe that we are abandonded. I think that people are just stupid. Really, I don't mean this as a joke. Ignorance is a poison in our community today. We have all had someone slam a door in our face, neglect to notice us juggling a baby carriage and a wheelchair, parked in a handicapped parking space, gave us the finger, or simply stare at us as though we were the bearers of a tri-headed child. :) Seriously though, if you think you are alone, you are not. I am here to talk to (call my cell not my home) or come hang out (between therapies of course). But this is our life, its not fair. Some days its horrible other days not so bad. But either way, I can't imagine livng life from Zachary's prespective. If I think I have it bad, I think about how he must feel, or would feel if he could. And all the people that think he's "retarted"... they are jerks. There is a little guy that works at my Publix and he has down syndrome, I don't know how old he is, but he is probably in his 20's. He is functional, he is kinda repetitive. He has told me that he is from Maine everytime I go in there but I don't care. Once when I was in there the cashier jumped all over him for talking to me and my kids and repeating himself. It didn't bother me, I don't care if he wants to tell me he's from Maine for the 10th time. But he listened to her and stopped talking to me and he looked very sad. I told her that I didn't mind if he wanted to talk to my kids or me. She should be ashamed of herself for coming down on him like that. He wasn't bothering me. But in that moment (while talking to this obviously stupid cashier) I realized that there were probably many other customers that were annoyed by his repetitive conversation. But that makes them ignorant and rude. I do not choose to behave this way. It is not the community that has abandoned me, I have abandoned them. I don't need people like that in my world and based on your blog here, it doesn't sound like you do either. I won't claim abandonment becuase I choose to not participate in other peoples idiocy. I hope you find rest my friend. I miss you bunches and hope to see you and the boys soon!

Katie @ Chicken Noodle Gravy said...

Unfortunately, I'd have to agree with your definition of community. I don't know if this definition has changed over the years or if it's always been that way, but I do believe that there are only certain people you can completely rely on. Yes, there will be moments when a community grows and expands beyond our little families, but when it comes to relying and leaning on something permanent, we must understand that our core community is the only thing that's unconditional.

I truly enjoyed this post, and I hope both of our views of community are changed one that beautiful videos of baby squirrels needing help don't bring tears to our eyes because of the beauty and rarity of someone reaching out beyond their own community to help.

Stopping by from Comment Love Day.

Ash said...

I can certainly relate to your feelings of "community". We lost most of our outside relationships along the way, as well. Thank you for extending a hand into this community for those that are lookng and needing in their life. (((hugs))) from one Mom to another.

Popping in from FTLOB and comment sunday.

CinfulCinnamon said...

I do not disagree with your definition of community. Nor do I disagree with the comment made by Rebekah that "people are stupid". Because some people just are. However, I think that the majority of people are ignorant. Whether that is by choice (which I think makes them stupid)or they are ignorant out of fear. Fear that they will say or do the wrong thing around a disability. Fear that comes from the knowledge that "there buy by the grace of God...." And more importantly, I think people abandon others out of guilt. They are secretly glad that they don't have the issues that you must face on a daily basis. In their minds, there will always be "tomorrow" that they will take the step and try to help and support. But then tomorrows pile up, as well as the guilt associated with not doing anything. Then, it's just easier to avoid you. You are justified to feel abandoned. It takes courage not only to deal with what you deal with, but also to be the supportive friend. And unfortunately, in our "drive thru", instant message friends, and facebook world, many lack that courage. I wish you the best. and will be checking back here on you. I found you on my page, and I thank you for linking up.

btw....Riley is beautiful.