Friday, November 25, 2011

Seizure #93

I have been counting Clonic Seizures.  There are so very many I missed but this is my attempt to keep track.  Tonic Posturing Seizures are completely beyond counting and we just help him through as quickly as possible and move on with our day.  Anyway, Riley had had some spasms in the night and was willing to sleep while I got some breakfast; while I was out of the room he went into a pretty big seizure.  After receiving the Diastat rescue medication he still went on for 15 minutes.  Holding him on my lap, I could feel the convulsions throughout his little body and see the discomfort across his brow as his eyes and lips fluttered and twitched.

It's hard to be thankful and appreciate life when our little one must live this life.  I comforted him quietly hoping to allow Ronan to enjoy his pirate ship building and for John to proceed with his diving plan.  But, John discovered us soon enough and wanted to cancel his day.  Please go.  We both need a little normalcy somehow.  I insisted he go on his way but I know he will fret about Riley all the day long.

This is no life.  No one deserves this.  Not Riley.  Not his family.  And the lectures to appreciate my life, family and blessings from the oh, so many individuals who have no idea what it means to live this life are not only unwelcome but resented.  Hey, heck of on invitation to participate here isn't it.. oh, well.  That's how I feel.

Fortunately for Ronan, my mom was willing to drop Ronan for his planned playdate.   He cannot spend his life cooped up as if he were special needs as well. "November is National Epilepsy Awareness Month and the Epilepsy Foundation is asking everyone to Get Seizure Smart.  By taking and distributing the Get Seizure Smart quiz, you are helping us reach our goal of getting 5 million Americans seizure smart in 2011.  "

Not very thankful... Stacie


Cinnamon said...

Hey there. I was talking to my boss lady about you the other day while we were down in B-Springs on a job. Were you're ears burning? LOL

I took the quiz. I got 6 out of 7 right.

and p.s...... you are allowed to be ungrateful from time to time. I'd worry about you if weren't.


suelmayer said...

Stacie,I took the quiz and got them all right and I will encourage others to do it also. As another special needs mom it is not the life we wanted, it is the life we were given and I try to remember that the lessons are learned in how I get through it. Now that doesn't mean I love every moment, far from it...but like child, children and family are my focus and I take it one day, sometimes one moment at a time. I also hear the lines from those who are not walking the same walk...I smile...and pray that they never have to figure it out.

pglm said...

sending you another have a right to a bad day, a bit of resentment, and to have a sounding board....the cards you were dealt do not sound fun, but your strength encourages all of us daily as the hand is played out with grace, courage and hope for a better day tomorrow..... hang in there...........virtual hugs to all of you...

Fawn said...

Stacie, I don't know how you do it but Riley is so fortunate to have a Mom like you!