Day Break (Brake)

Opening my eyes the sky was lightening with the break of day.  Already past 6 am, simply still being in bed at this hour is a blessing.  I took a moment to appreciate the quiet for a moment.  The day is a little easier to face than it used to be.  Riley rested and in turn I rested.

A sharp intake of breath and a quick rhythm followed.  Up, lights on and over to Riley in full seize.  Gathering him us and trying every trick in an attempt to stop that seize as fast as it came on.  One minute goes by.  "Riley, mama is here!"  "Riley, come back to mama!" 

A second minute goes by.  Time to pull out the Diastat for seizure intervention.  No, I object!  "I am right here with you, Riley!  How can I help you."  

I know it's time.  No, wait another moment.  It must stop.  Drug intervention means both our days are gone.  We need our days.  Intervention means that nothing will happen in our day beyond the recovery of that drug.  "Please Riley, it's time to stop."  We have reached two and a half minutes.  Put him down mommy and get the drugs!  No!  "You can stop this, honey."

Losing our day.  It has been one of our patterns in life.  This is Riley's life.  This is my life.  No, we are trying for Riley's sake.... for my sake... for the sake of this family to have a little bigger life than this.  We must have our day.  Riley can go to school and play music and laugh with his teachers and classmates at circle time.  I can try to be an adult and get a life.  We must all move on beyond Riley's birth circumstances.  

It is time for drugs now! 

Putting Riley safely down on my bed while I set up the syringe... the seize finally slows and stops.  Just in time.  

Then the next reaction begins with leg spasms.  Big, strong, frightening, stressful leg spasms.  One foot shoots out with a tow poking into my gut.  Can I get my arms around him enough for comfort while trying to alleviate his pain?  A forearm hits my head and a little hand grabs desperately pulling at my ear and hair before flying open again.  "Mommy is here Sweetheart... I'm trying to help."

Five minutes go by in constant spasm.  And then 10 have gone by in what looks nearly like a battle.  Soon it is nearly 7 am.  Riley's tired body begins to relax.  I set him up comfortably on my bed and prepare for his school day.  He needs his day.  I need his day.  Very soon we will both have forgotten this past hour and moved along.

I return to change his clothes and am greeted with a smile.  "Oh Sweetheart, you are beautiful.  Good morning to you."  Sigh, wet bed clothes... think I'll start my day washing sheets... again....

School art by Riley

We are all special... by Stacie Wiesenbaugh

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from "ReRe," John's mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye.... no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds... those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don't currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.'s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us.... mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special... by Stacie Wiesenbaugh