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"I looked in Mommy’s purse…"

Most places I go, someone comments to me, “I love your purse!”  This always brings me an inward laugh as I thank them for the compliment before moving on.

The evolution of my handbags.
Fashion escapes me.  John has never cared and likely prefers that I not be spending readily on clothing and accessories.  Yet there is one area of this lack of style that did need improvement in his eyes.  Early in our marriage, John announced that I should never again select my own hand bag again.  In future either my mother or himself should do that for me.
Fine with me.  It never mattered anyway as long as it suited my purposes.
When Riley came along and I was spending a great amount of time in hospitals and doctors’ offices (yes, even more than now), I carried a tiny wallet sized purse on along strap.  This was a stylish, I assume, Brighton bag gifted to me by my mom. It suited me as I never carried much and didn’t want anything in my way as I carted Riley around.  It did not even have room for my car keys which dangles from my pocket or the phone shoved in the back of my jeans.
Years later,my mother decided to replace this bag with a dark red leather backpack style handbag.  This bag, goes everywhere.  I sling it over my back or the wheelchair and stuff every necessity and list possible deep into the main pocket.  Occasionally, I will treat the leather.  Somehow, this has become the ultimate mommy purse which swallows up everything.  I donot even remember the designer name though I am certain it is a popular one and well made.
For two months I blamed my husband for the loss of our camera lense cover.  He looked everywhere.   Even admitted (as a good husband should) he had it last.  One day when cleaning out my purse, it was found in the bottom of my purse…. story continues…. Ronan lost his pencil sharpener for over a week (driving us all crazy looking for it).  Jokingly John said to Ronan “Check mommy’s purse”. About an hour later Ronan whispers in John’s ear “I looked, it wasn’t in mommy’s purse”
The new school year for Lee County begins this coming Monday.  The organizing and shopping has been complicated.  I do not take Riley out more than necessary, errands are especially avoided for obvious reasons.
Somehow I have managed to gather the majority of the required supplies for Ronan; Riley’s list definitely needs work.  Ronan and I surveyed his pile comparing it to his list received from the school.  Some things needed attention and organizing,among these was  “sharpened pencils.”  I instructed Ronan to locate his manual red pencil sharpener and sharpen his school pencils.
“Where is the sharpener?” Ronan asked.
This seemed obvious to me, “Check your desk and the pencil box where you keepit.”
“It’s not there.  I looked everywhere.”  I refuse to replace something we already possess.   This was an unsatisfactory answer and over the next several days we searched for the missing bright red sharpener.

All this summer we have also missed a camera lens cover.  For two months I blamed my husband for the loss of our cover.  He looked everywhere.   Even admitted (as a good husband should) he had it last.  One daywhen cleaning out my purse, it was found in the bottom of my purse…. meanwhile the search for the pencil sharpener continued (driving us all crazy looking for it).  Jokingly John said to Ronan “Check mommy’s purse”. About an hour later Ronan whispers in John’s ear “I looked, it wasn’t in mommy’s purse.”

So, I have become the massive purse toting mommy. Who else have I yet to discover through my sons’ eyes?
We are allspecial… by Stacie Wiesenbaugh


Photobucket 

Appointment Summer

It does seem as if life with Riley is all about schedules and appointments.  The production of planning, getting through the next activity and arriving at the right place and time, in the reasonable mindset, wear us out.  I find myself procrastinating with each line on my list for the day and admittedly some of the lines are left unmarked.

Riley’s schedule is packed as Summer ends very soon as Lee County returns to school on August 8.  The boys and I have spent a lot of time traveling and hanging out in waiting rooms.  These events wear my patience thin with the various people we encounter.  It takes a great amount of energy simply to show up somewhere with Riley that finding us easily disrespected vexes me (See April Fools in a Doctors Office or My Fragile Child).
The neurologist clinic appointment had been canceled on us and rescheduled to a later date and time without consultation. I had asked for a time change if possible to an earlier hour and was told Riley could be seen at 8:20 am.  We arrived with moments to spare and watched three ambulatory patients arrive after us and leave before we were called. I questioned the nurse on one of her pass through’s to make sure she was aware Riley was available, she assured me she did.  At 9:20 am we were finally called back for the same nurse to take our stats. Unhappily, I paused at the scheduling desk reminding the woman behind the computer of our allotted time.  Only then did she notice, but did not care, that we had been booked at 8:20 at the same time as another patient.  My voice raised and our Neurologist rescued her by dispensing with our stats and seeing Riley immediately.  The doctor has no fault in this and I immediately felt guilty for complaining.  Dr. O has been nothing but kind,considerate and gentle with us.  However,this treatment by office staff has become all too common everywhere we go.  Do some see a child in a wheelchair and feelthat child’s time is somehow of less value… he will not complain, he does not have a playdate planned and mom is simply a state at home mom with no value to society.
The week continues with lots of un-returned phone calls and planning to finally schedule a Neurosurgery appointment for this coming Monday.  A CT and shunt series at a radiology office.  The dreaded Ophthalmology has been delayed until Fall.  All of it adding to the stress of going through these motions to keep all parties placated in the oversight of Riley’s care.
Wednesday found us at the dental school,for both boys for teeth cleaning.  The school has been a wonderful way to care for Riley’s needs.  The young dentists are undeterred by the special needs challenge and interested in his health as opposed to some of the long-term professionals we have tried in the past.  Hopefully no one is offended by my summing them up so disinterested in Riley, I spent my early years of work in my fathers’Oral and Maxillofacial Surgery Office and learned the importance of respecting the patient through observing my Dad over the years.   I maintain a “cheat sheet” of important information which I have shared with every medical office Riley enters. There are no secrets to Riley’s condition.   Upon being called back for our appointment, a previously unknown Sergeant had a copy of Riley’s cheat sheet up on the screen for review.  “Any changes to his condition?,” she demanded. “No, pretty much the same,” was my answer.  Then I added, “he seized on Sunday.”  This met with a reprimand that they must know everything right up front and she began to argue with me.  We had only just begun the conversation.  Here she was with full-disclosure right in front of her and she wants to yell at me.  She started to go down the road that he could not even be seen that day having had a recent seizure.  I was taken aback.  Perhaps special needs do not have the right to full care, it is simply too risky for medical professionals to work with them?  Maybe she does not comprehend special needs or the explanation of “seizure disorder” that I had put directly in front of her. Before the confrontation escalated, a familiar face appeared, Dr. M, Riley’s first dentist in that office before she graduated.  She had returned to be one of the leads in the office and she was a very welcome and reassuring presence.  The Sergeants’ concerns were left behind and Riley received his x-rays and cleaning which he tolerated beautifully.
Some of my frustration with all these appointments is due simply to navigating everyone we encounter.  So frequently, people block our path, quickening their step to be ahead of us or allowing children to stare to the point of causing us discomfort. There are individuals who cross our path with consideration.  Those of you who do this, I notice and I remember  and appreciate your gesture no matter how humble.  I remember the tall and handsome twenty-something Asian man tripping over his own feet when Ronan reached the door of McDonald’s off Daniels before him.  He could not help, but the intention is enough for me.  I remember the sixty-something gentleman passing by during the wheelchair unloading at NDIC asking how he could assist, this is a procedure that is difficult to explain,but the desire to help warmed my heart. Those small moments are few and far between, but they stay with me.
Robert, Burt, Heidi and Pick A Spot bring Riley around to pose for the camera.
Ronan waits patiently.  Note: both boys have added to their tie dye collection.
Thursday brought us back to Naples Equestrian Challenge for Riley’s lesson.  Currently, there are plenty of volunteers,likely this is thanks to the high-schooler’s fitting in their community service hours over the summer which gave me the chance to snap some shots of Riley aboard Pick A Spot.

 Taking a moment from the barn, volunteers rest in the sliver of shade. July 28, 2011 4:30 pm.
Better gonow and do some more planning.
Anyone else out there have appointment stories to share? I thank you for stopping by.
We are all special… by Stacie Wiesenbaugh

Social Parade Follow On Friday, Follow Me and Bloggy Mom’s

>Smart and Trendy Moms

Visit the Social Parade on Smart and Trendy Moms for lot’s of wonderful blogs to check out!
Hope to see you there.My plan for a Monday Hop.
Check It Out.Great ideas for special needs crafts.
http://kidzorg.blogspot.com/2011/07/diy-ideas.html

Tiki Hut Sunday

 

Special Needs Blog Hop

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.

Let’s Get Social Sunday

Let’s Get Social Sunday

Disability Blog Carnival Ride

Butterfly Dreams is hosting a Blog Carnival with the theme “community”… thoughts anyone?

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