Blogging Worldwide

 Found the a wonderful surprise in my email this morning:

Mary Rebecca created the adorable new Riley's Smile Button for her Blogging Worldwide project.

Isn't it great?

The boys and I are on our own again this morning.  John is working yet another Sunday and sees this Sunday morning only project going through next summer.  I am missing my husband and the boys definitely miss their Dad.  Ronan is being a very understanding six year old.  He rose as usual before 6 am, got out of bed on his own, dressed and came downstairs and entertained  himself (or rather cared for his herd) on Webkinz allowing me to focus on Riley.

Have a safe and wonderful Labor Day Weekend.

Stacie

If you stumble by my post today - Please link up with me at the sites below

Enter a Giveaway

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

a : state, commonwealth

 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:

http://www.godvine.com/Baby-Squirrel-Gets-Help-from-an-Unlikely-Place-217.html

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.

The Blog Designer Network

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A Day in the "Life of Riley"

This expression certainly has a very different significance in my family than it's intended meaning. 

The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday.  It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life.  I also remind myself that this is a niche blog not a reference book by a professional.... and I may very well be the only one reading it.  Well - maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction.  But hey, we all have dysfunction.   Perhaps I will simply not add any more concerns to the day and just make some "notes to self" for more information later.

Rising with Riley after a night of Riley and then getting out the door with Riley... more on that later.  No school today.  First appointment of the day is 8:30 am 45 minutes north  with the Pulmonologist, Dr. B.  Always take the first or second appointment of the day... more on this later.  On this very humid morning, Riley was dressed lightly.  As we headed north a heavy downpour slowed us down and drenched us while unloading from the car... more on this later.  Should have called this post "More on this later."  We had a new experience this morning.  I put together his wheelchair and our supplies underneath the building entry while a pretty Latina unloaded her three young boys into the same space as quickly as she could to keep them dry.  Normally, most people pretend the child in a wheelchair is simply in their imagination.  As I brought Riley through the rain, she whipped a Whinny the Pooh blanket off her baby carrier  and threw in over the wheelchair before I could put him down exclaiming  "He'll be cold!"  She touched my heart worrying over my son while her own waited.  She eventually accepted the blanket back when everyone made it inside.  I'm sure she has no idea how exceptional she is... but I will remember the few moments I was near her.

Time to go through the details of my day a little quicker.  They are important because the difficulty of getting  through a special needs day is so huge to me even after all these years.  However, it's a niche blog and I have time.  There was a plan for the day.  As always it changes.  Breakfast for Riley in the exam room...  I feed him when and where I can.  Today I want to recognize how greatly I appreciate the professionals caring for Riley, though sometimes I do take issue:-)... more on the later.  Dr. B is wonderful with his gentle probing to ensure he learns all the detail he needs and has never failed to take his time to educate me further.  Today's result: stop Pulmicort treatment for the summer, Riley's lungs are clear!  Thank you, thank you, I will.  Second appointment of the day at 11 am, we move on the Occupational Therapy (OT) with  the beautiful and competent Miss J.  She is amazing and I learn from her each time Riley and I sit on her mat.  I am grateful for Miss J.

Somehow during the day with little thanks to me, Ronan has a play date and even tennis lessons.  Daddy is looking out for him!  Riley has many more activities on his regularly scheduled Mondays.  The Chiropractor and Horseback Riding are still left.  However, his little body doesn't always cooperate.  As soon as he made it home and began lunch he began vomiting.  Unfortunately, he cannot warn us and this is an event in itself.  Vomit is one of the things that pushes my buttons due to our history... more on this later.  Eventually he seized for 4 minutes... oh, must remember to log this event.  Cancel everything!  That's how it goes.

Tomorrow is the dreaded IEP.

This was not a day to write home about.  It was a day in the Life of Riley.  More on that later.