The Polar Express Chair

The holiday season has kept us pretty busy... Daddy makes sure Riley can participate in any celebration.  This is not an easy task so decorating the wheelchair is usually the first step.  Today Riley's class will watch The Polar Express.  His chair is covered in lights as well as a musical ornament.  They'll know he's there today!

Here Riley is before fully awake waiting for his school bus.

Last week John let me tag along to his school presentations as The Shark Tooth Guy.  First he met Kindergartner's in Mrs. Doyle's classroom then on to the 1st Graders, including Ronan.

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."

Response:

"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 

Wheelchair Cleaning by Daddy

Dinner was delicious!

Riley could not get enough.

After having his fill he sat and contemplated his meal from the safety of his wheelchair.

Then perhaps dinner was not quite sitting right and back it came.

The first warning arriving when his leg tremors appeared to be motorized.

Everywhere!  Remember The Vomitorium from the movie Stand By Me.
The scene had horrified me, little did I know how close to my reality it would become.
Trying not to slip across the tile and spread the stuff more than absolutely necessary,
I rush Riley to the shower. 

Daddy has removed the wheelchair and all contents to the lanai.

Ronan has retired to a corner of the couch he hopes will not be reached by the shower Riley is causing, barricading himself behind the cushions and immersing himself in Ben 10: Ultimate Alien.

Soon, the floor is piled here and there with discarded clothes, burp cloths, towels, sheets and diapers.

The washing machine is again hard at work.  Daddy and Mommy run around in various states of undress.  Ben 10 gets a little louder.

The wheelchair is unrecognizable as each part that could be dismantled is strewn across the lanai.

The hose runs at full blast across the various pieces.

Somehow the stuffed frogs are spared.

 Riley's medications refuse to stay down.  By 4:35 am we are all worn out but still hear his reaction to a muscle spasm triggering seizure #81.  No stopping it now without anti-seizure drugs in his system.

Diastat to the rescue.  Event ceases by 4:44 am.

Riley finishes this with a great big yawn,
as if to say "Oh, glad that's over, I'm a little tired now."

Daddy goes off to a full day of work after this eventful night.
No idea how he manages that.

Riley has the muscle tone of a wet blanket.

Cancel ESY and horseback riding at NEC.

Waiting by the door,
Ronan cannot wait to get to Vacation Bible School.

Wheelchair needs to be reassembled.

Another day in the Life of Riley.

Day Number Four

This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.

Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.

Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he's running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment... not very quietly though, lol.  But then, he wouldn't be Riley if it was quietly.  Even when he's ill... he is still the sweetest child imaginable.

Still need to get in the laundry for those sheets of Riley's.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.

 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley's Smile!  Thank you Maria.

April Fool's in a Doctor's Office

It is a beautiful Saturday morning.  John is at The Market on Goodlette Frank selling fossils as The Shark Tooth Guy.  We are hoping for a busy turn-out as the other farmer's markets close down for the season.

Took  Ronan in for a dermatology doctor visit.   Since I must bring Riley along there was the great production of making sure he was well  fed and comfortable, pack up with anything he may need such as clothes change or diapers, then load up Riley's many supplies.  Then I use the heavy ramp, disassemble the wheelchair and fit it in the back of the jeep.  Carefully place Riley in his seat.  Ronan, must just bring himself, load and buckle himself.  Reverse everything on the other side when we arrive in the parking lot for the medical building. 

As I do all this and others arrive long after, file by and sign in to be seen before us.  This is no one else's fault, but it gets to me anyway.  My time is just as valuable.

It does remind me however, that there are countless instances when I do have legitimate reason to be annoyed by the other clientele coming and going.  One memory stands out above the others.    A visit to Dr. D. Perlmutter's office in a beautiful medical building in Naples.  After going through the production and finally arriving inside the quiet open foyer.  Keep in mind, at the time Ronan was just a baby and I held him in one arm while pushing the wheelchair with another.  We must have been difficult not to notice yet everyone did.  I located the single elevator and positioned us a few feet in front of the door in the event people would be exiting.  We were not so easy to maneuver so I usually try not to be in the way.  We waited longer than expected and found that many people entered the building just after us and wanted the elevator as well.  We were in the middle of a large crowd when we had started alone.  The doors finally opened.  I do not even remember if anyone stepped off.  I do remember very well that the entire crowd surged around me, piled in to the elevator, turned to face me - each with a stone-faced expression - with no room left and allowed the doors to close before I could even move.   Would you believe, it happened again.  The anger  I felt sent heat to my face and I felt my pulse rising.  The next load I shoved us, Riley - chair - baby and all through the crowd onto the elevator .  The individuals there at that moment were certain to dismiss me as a crazy woman.

Yes, this really happened just as I related the story!  This scenario has repeated many times to various degrees.  Please help me to understand why this happens if anyone has insight?  I welcome your comments.