Friday, March 8, 2013

it comes in cycles



Trevor has had very little time totally seizure free post surgery.



Which does NOT mean the surgery is a failure.  Or that we have any regrets.



In fact, that couldn’t be further from the truth!!!!  The surgery has helped us control his seizures more effectively and has given him a chance to make developmental progress!  I have NO doubt that I never would have heard his sweet voice meaningfully say words if we hadn’t gone the greatest lengths to rescue him from the Seizure Monster.  And he’s learning to say some very sweet (and sometimes not so sweet) words!



I can hear him through the school room door.  His ABA therapist is running a social questions lesson and she asked him who his mommy is.



Den-elle, he said.



I wuv you, Den-elle…he repeated.



Sweet sweet words!!!! 






Seizure Tracker - Control Panel - Mozilla Firefox 382013 93250 AM.bmp



We’re in a seizure cycle again. 



Epilepsy is like that.  Cycles of seizure activity followed by unexplainable cycles of seizure freedom (or reduction).  Right now…he’s seizing daily.  Sometimes mild.  Sometimes more aggressive than we’ve seen since (most of) The Monster was sliced out.  He’s had episodes of vomiting (with no other symptoms) since September that we’re convinced are linked to seizure events.  The scariest was finding him in a puddle of vomit one morning.  We never even heard him in the night.  He could have aspirated!  Jonathan told me this morning that when he goes to wake Trevy, deep down in his heart he’s wondering if today is the day.  The day that Trevy doesn’t wake up.  He had a very nasty cluster of seizures at church recently.  That was the day Jonathan told me where we would have Trevor’s funeral and who would perform it.  We’re not morbid like this all the time.  But when he’s in a nasty cycle the fragility of Trevy hangs on our hearts and hovers over our minds every minute of every day.  And in case you were wondering, it’s an emotional BUTT KICKER!  There is just something about seeing him seize that takes it right outta me.  I feel like a zombie lately.  If I smile, it’s only because I’ve trained my mouth to do so.  If my eyes water, I might blame it on allergies but it’s probably because the sadness keeps breaching my heart flood gate against my will.  If I crab out at my family, it’s because everything inside me aches and my emotions explode without warning.  If I seem anti-social, it’s because I am.  I protect my heart by withdrawing.  I can’t stand cliché during times like this.  And I swear if one more well-meaning person minimizes our life with epilepsy (everybody suffers, I worry about my typical kids too, look how he blends right in with the four year olds) I’m going to do lose it!!!!!  These are the seasons when I understand on a very intimate level when Scripture speaks of “the whole earth groaning for the day of Redemption”.  Everything in me groans some days.



Today is one of those days.





teamaidan said...

I hate this for you and with you in so many ways!!!!

Adesta said...

D, I am so sad to read this. I knew that Trevy wasn't seizure free, but I didn't realize just how bad it still is. I wish I could wrap you all in my arms and take away all the bad stuff that continues to happen. I can't imagine what you guys go through day in and day out. You all have such a great amount of strength to go through what you do on a daily basis. It seems as though you all take it in stride, when in reality you fight to keep things as normal as you can. I will continue to say until the end of time, you are the strongest person I've ever met and I admire you for that strength and I'm proud to call you my friend. Keeping all of you in my prayers.