Little battles

Riley and Ronan are seen here hanging out with Miss Southwest Florida 2012, Miss Caroline Kay Dixon, at Freedom Waters Foundation’sHeels & Reels last month.  Miss Dixon was very kind and sweet with my boys and was happy to don her crown again after a very full event for a photo.

One little battle after another.  This special needs life still feels like a war to me.  A never ending taking up of arms one moment and protecting my child the next.  This week they are just tiny little battles but I have become weary of heading out each day.

Monday, Our week began with a pulmonologist  appointment.  The bus arrived as Riley and I were loading into the van.  Sorry Miss Crystal!  Sorry Miss Katrina.  I neglected to notify you at 6 am this morning as I was frantically preparing Riley for his six month evaluation by Dr. B.  I really do intend to be more respectful and not have the bus waste time and energy when Riley will not be using this service.  Another mistake.  As expected, I barely managed to pull into the parking lot by our 8 am time slot.  Then after rushing out our door, the 45 minute drive, the usual production of loading and unloading then simply maneuvering into any office building, feeding Riley in a waiting room…. we waited another hour to still be the first patient of the day.  Riley’s report went well.  It is the season to begin regular nebulizer treatments to keep his lungs as healthy as possible.  Add two breathing treatments to our day, sigh… Dr. B also brought up his concern over the shunt and the risk of infection passing through it easily to the brain.  Here we have yet another health concern for John and I to ponder.   Dr. B. recommends that any fever presenting in Riley should be a trip to the ER.  Better to address any fever immediately than chancing a brain infection.  Then of course we look back and had determined it best to avoid the ER/hospital whenever possible.   Oh Dear.  This is contrary to our decisions and best plan of care… this will be further discussions by Riley’s poor battle weary parents.

Tuesday, The Shark Tooth Guy scrambled after a full work day to present to the Wolf Pack.  Afterward, the report proved that all the scouts enjoyed, including TSTG.

Wednesday morning, the bus broke down in our driveway.  It was a very very long morning for poor Riley.  He was very patient as were all the waiting children already aboard.  The day John and I actually had a plan to exercise together.  We needed that little connection, but it was not to be.  I managed to stride into yoga with 20 minutes to go… big NO, NO, I know.  But John had aved me a spot and I was not going to completely let that go.  And we try to stay healthy.  I follow a blog called Brain Posts, remember it is important to have your own PT time –  Exercise and the Brain: Fatigue.

Wednesday evening, Ronan attended religion class.  As we left after class through the parking lot, St. Leo has now joined all the rest of the schools and churches.  The handicapped spaces were full of cars without permits.  I noticed the same healthy children who had skipped and chatted away along with their very able parents loading up.  I must be truly battle weary: I confronted no one.  This must be a very bad sign for me.  A few more steps along I did turn back to the Religion Coordinators’ table to present my case about respecting the handicapped spaces no matter the time or event.  Ronan did not even blink at my dragging him back.  He knows this cause backward and forward.  And once again folks, you are teaching your children to disrespect all others for the sake of your own convenience.  Perhaps you recall my last rant: Climate of Disregard.

Today is Thursday.  This evening I am hostessing a Thirty-One presentation for my friend Deidra.  We have agreed to exchange parties:  Thirty-One tonight and Arbonne at her house next week.  I hope we are both successful.

The week goes on and the battles we all share continue with work and schooling.  My job right now is to find some successes and come out stronger for the sake of all my family.

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