Even though I found a reason to go on each day, it was still so, so hard. My little girl wasn’t getting any better and soon those horrible seizures came back with force. This time they changed their appearance a little bit, perhaps because Reality and Guilt have a sick sense of humor but whatever the reason, it was awful. Instead of the typical grand-mal type, her seizures were manifested now through staring fits or odd behaviors that lasted several minutes until she would go into a full shaking, tonic-clonic seizure.  Sometimes we knew one was coming, sometimes we didn’t.

Our world changed again in an instant and we were back to doctors’ appointments and medication changes. It was just as scary as it had ever been.  She just wasn’t the same little girl; her eyes were blank, her stare cold, and her face as pale as porcelain.  She was biting and chewing on things worse than before and she seemed to regress in many of her skills.  She was lost, a little girl uncomfortable in her own skin. Her doctors requested more tests and then informed us that she was probably having hundreds of seizures every day that we weren’t seeing. We all started obsessing about every little thing she did waiting for signs that a seizure was coming. Her teachers had the nurse on speed dial and worried on a daily basis because they were concerned for her just as much as we were. What must her world have been like with all of those ‘interruptions’ and losses of awareness? What horrible things were going on inside that little girl’s head? Again, all I could think about was when was the happily-ever-after that Boy and Girl wished for ever going to happen?

School Journal Entries (Elaine Stephens and Maggie Grove, Miracle Worker #2):

August 22^nd, 1997:  Seizure began at 2:00 when she grabbed a green marker and just started scribbling on the table, then within a minute the seizure started.  Ambulance came at 2:15. I now have a phone in my classroom.

September 5th, 1997:  Was “out of it” this morning. She has had several petit-mal seizures this morning. She was better in the afternoon. Had two accidents today. Her wet clothes are in the bag. 

October 17^th, 1997:  It was a hard day for her, lots of hitting and pinching herself and us, very non-compliant all day.  When I took her to the bathroom she kept hitting herself in the head and telling me “L hit herself, look”.

October 21st, 1997:  We’ve stayed close to her as we are seeing the behaviors we see before seizures, quiet, running away, biting self, defiant, compulsive. She had to come back from Pre-K for singing the days of the week loudly during ‘story-time’ (however, I think we can master her objective for sequencing the days of the week).

November 3^rd, 1997:  Quiet today, especially at lunch.  She had to come back from Pre-K classroom because she wanted to take her shirt off.  She came back with me and we practiced keeping our clothes on and I did the best!

November 5^th, 1997:  She told Maggie that she had to go potty, took her several times and nothing.  Then while outside for Pre-K recess she pulled down her pants and went right there.  Other than that it was a good and compliant day!

November 20^th, 1997:  Wow, we can tell she doesn’t feel good.  She alternates between laying her head on her table and being a monster.  She got away from us at lunch.  We saw 5-6 little stares before lunch.

December 12^th, 1997:  Seemed more oppositional today, especially in the pm.  In her Pre-K class she tore up materials, hit and bit herself, banged her head against the wall, threw toys and wouldn’t pick them up.  It was a pretty rough day, hope your weekend at home is better.

December 15^th, 1997:  Well, the mall trip was a disaster.  I was late getting there and Maggie already had them back on the bus, so I stayed with her so the other two students could go back inside.  Our little girl was amazing, she pulled down her pants and Santa’s beard, stomped, yelled, bit several kids and herself.  It must have been wild.  Bless her heart, I don’t know why being sick affects her behavior so negatively. 

January 7^th, 1998:  Wow!  She messed in her pants and wet her pants, got her poop out (to mold it I guess).  She has been calmer without that medicine but she still looks at me while she calmly destroys my work.  Oh well, she worked for a while today on her Language Master, colored shapes, and practiced cutting.

January 27th, 1998:  I guess we’ve been having the calm before the storm. Today we had a lot of defiance, biting and scratching. However, she handled the potty by herself with verbal prompts and she figured out how to use the scissors and has cut paper every chance she got!

February 10^th, 1998:  Maggie has requested that L get her nails trimmed ASAP because her hands look like she’s been in a cat fight! She ran from Maggie after pm recess.

April 16^th, 1998:  A little rough this morning-noncompliant.  Tried to bite Maggie and couldn’t sit in a chair for her five-minute time out so had to stand with me and hold my hand. We are running out of ideas of what to do with her during this hard time, but we won’t give up trying to figure it out!  Hope you are doing Ok.

May 13th, 1998:  Found a movie in PreK that she liked called “Wee Sing”. She enjoyed digging in playground pebbles this morning. We did a little tune-up today, she made a mistake and told me “shut up” when I told her to pick up some cards. She later got upset with ChiChi for crowding her and started to bite but changed her mind and pulled her hair instead.