Friday, September 20, 2013

Dreams and Prayers {Epilepsy Awareness}


Like most Momma's, I have big dreams every time one of my babies are born.  It was no different with Jackson.

Like most Momma's, my thoughts were not on him being sick - that was a mild thought in the back of my mind - what if he has Epilepsy too, like my girls, but I never thought it would actually happen.  Then it did.

Right now, Jackson's only a baby but I can see him grown, big as his Daddy or bigger, reaching at least 6'4 with blue green eyes like mine and a wide smile.  I can see his huge feet, that can fill his Daddy's shoes, and his hands large enough for hard work, but gentle in love.  I can see him loving the outdoors - he already does - and working hard like his Daddy, Grumpy and two Papas before him.  I can see his Daddy teaching him to shoot his bow, his gun and also see him nailing a deer on his first "real" hunt.

I can see all of these things clear as day, but I know they are not promised by God.  The reality is that he may never reach the age for me to see these things.  Epilepsy is a thief that sneaks in and attacks without notice and takes those we love in the blink of an eye.  Jackson's lack of control puts him at higher risk for this, doubles his risk for SUDEP - Sudden Unexpected Death in Epilepsy.

Right now, we are evening out on treatment.  The Phenobarbital is his 6th drug in two months but his 3rd specifically to control the Epilepsy.  So far it's working.  He's been on this medicine a week and a half and he has had two seizures that lasted less than a minute each, with no after effects.  He's had a few mild absence, too but they lasted less than 30 seconds each.  This is a huge change from weekly - sometimes more often - Tonic Clonics (Gran Mals) we were seeing in him.  He can even tantrum and he comes out without seizing first.

I'm thankful for these changes.  I'm thankful we have control.  I'm thankful for answered prayers.  But I am not naive enough to believe that we will never face these things again.  Medicines become outgrown, treatments begin to fail.  At this point, I can only pray this doesn't happen, pray that treatment continues to work and continue to enjoy the days that God has blessed me with, with my children.

I will never forget the fear I felt in seeing my baby without breath, struggling for life.  Neither will his brother and sisters.  But we have a faith in God that He will bless our Jackson and our Laycie, that He will allow them to share our life, our days for a while longer and that I will someday see my boy filling those shoes of his Daddy and see all of my sweet babies living their life seizure free.  Prayer does miraculous things!

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