Tag Archives: community

Goodbye, Sleepy Beach Town

7/14/16 Seems rather a sad way to spend my birthday, seeing my city in jeopardy. The life we have here with Riley is at risk. Learning just yesterday from a friend that a road would possibly be coming down my own backyard, I attended a City Council Workshop, City of Bonita Springs, Florida Thursday July 14, 2016.

Imperial River with FWF

We were blessed yet again to have the wonderful not-for-profit Freedom Waters Foundation

mother and child

Dear Mom

We did not know each other

Early this morning I followed through on a shared post

I felt you in my heart since the first moment I learned of you

This news report was brief, unemotional

Yet I recognized you and your child

I know you intimately

Keep the Beautiful in Bonita

Last Saturday the boys and I met up with Ronan’s Honor Society, BHS, in old Bonita to participate in the Keep The Beautiful in Bonita Springs.  I was determined to take Riley along

Valentine Wrapping

Classroom Valentine Art Feb 2015

The last few months of our journey have been a little extra challenging.  But now it’s time to resume Riley’s Smile.

Family Brunch

Out for Brunch at Collier’s Reserve Country Club, Feb. 15, 2015.

Last Thursday I discovered John working on Riley’s chair. 

a little voice

We are very fortunate to have a kind and caring team of driver and attendant. Truthfully we have been very fortunate over the past several years, discovering kind and compassionate people behind that school bus. Our driver this year has even gone to the Transportation Department successfully requesting to change the route to shorten Riley’s ride time. As usual, Riley is the most fragile on bus 27125 and both driver and attendant do every thing they can for their precious riders.

The Shark Cage

Monster Madness

November 2, 2013
It was a full week of festivities.
Pumpkin carving.  Ronan tackles his independently.

Pumpkin carving. Ronan tackles his independently.

Family Fun

Family activity is a priority.  It sounds so simple: one little family having experiences together. We are after all, just a family of four.

I Notice

This is one of those morning’s when the special needs aspect of my life rattle around my head just a little louder.  May I remind you Dear Far and Between Reader,this is a special needs blog where my intention is to share that the special needs life does not take us down the average path and my vantage point sometimes takes me in odd and frustrating directions.  

Today, I am simply focused on the little behaviors that I interpret as revealing a person as dismissive of those around them or caring.  Now, I must remind myself to not be so black and white or even judgmental because I certainly resent being judged.  So, perhaps I’ll just leave this as a bit of a rant.  If we are all lucky, I’ll remember this in my own reactions… but don’t hold your breath.  As Riley’s mother, I get to be Crazy Woman or the term I read recently may be more appropriate, “Dragon Mom.”
The day beyond our own walls begins with the arrival of Riley’s bus (bus 27127 is quite reliable and calm recently).  It is my neighbors who show incredible disrespect during Riley’s pick up and drop off in front of our home.  On many occasions neighbors have passed by the bus while lights are flashing and Riley is loading.  Last May, I fired off an email to my community not even thinking about who the latest lawbreaker may be: I simply knew I was angry and offended.
“Subject: school bus
… it is illegal to drive past a school bus loading a child… yes I see them and will definitely remember their lack of respect and consideration in this matter.  Thank you.”
“I know you are speaking of me as I passed the bus this morning. The red lights flash the entire time the door is open. Your child is being loaded from the house side. There is never anyone on the street side. Are you suggesting everyone sit and wait the entire time the loading process is going on? I will make sure I never leave the community by going past your house again so as to not upset you.”
I shared my frustration with another friend and neighbor who seemed to empathize.  This week, same neighbor drives right around the bus with flashing lights.  ?. Shall I take this as my opinion and the law are not as important as your needs Dear Neighbor?  I saw you. Now what should I do?  Pretend that I did not?
While I was busy ruminating on the lack of respect toward my child, I drove up to Riley’s school to collect him for physical therapy.  Being the quiet lunch hour I parked at the front circle, threw open the jeep hatch and arranged the ramp before bringing Riley out to the car.  When I returned to the vehicle, mowers were going all around and it was quite loud.  My focus turned to Riley’s happy greeting,removing him from the wheelchair and settling him comfortably in his car seat.  When I brought my head back out from the car I turned to discover the wheelchair no longer beside me. 
What?!  Oh! There stood Jamie (I’m certain I’ve mentioned his kindness previously), the gentleman in charge of Rayma‘s facilities.  He had just dismantled the chair as he had seen me do before, slid the heavy chair into the back of the jeep, folded up the ramp and was closing it all up nice and neat.
How do I react to this?  This is an amazingly kind and sweet gesture.  How many times have I loaded that chair in my own driveway, hugely pregnant and had every male neighbor – and at the time one lived in every house two to the right, two to the left, four across the way – and the only man to ever to rush to my aid(sometimes straight out of the shower and barely dressed was my own husband).  There are some other random individuals to have helped over time and I remember them. I will always remember them. 
Yes,it’s a big deal to me.  Thank you Jamie!  You are pretty wonderful.
We are all special… by Stacie Wiesenbaugh 

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.

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