Ironically, it was guilt that kept me going each and every day.  I again made it my mission to help my little girl, but this time not because I felt I was chosen by some higher power, but because I felt it was MY responsibility and MY fault. I was over all that “beauty of Holland” and “chosen” stuff and so my new phrase became, “When you get to the end of your rope, tie a knot in it and hang on!”  By this time, I was simply in survival mode. I started keeping a diary, a place to record my baby girl’s activities and a private place I could keep my true feelings.  It was hard listening to people tell me what I should be doing and how I should handle her fits.  Everyone felt compelled to offer their advice about how I needed to be firm with her and not let her get away with things. I listened to it all, but deep inside it made me feel even more at fault.  Were they right?  Was it my fault that she was acting up all the time?  Was I the cause of all of this?

 January 30^th, 1995:  Whenever we go out, Mama puts you in your stroller and I bring juice and chips.  You love to stay moving and you say ‘hi’ to everyone.  Most people say ‘hi’ back but if they don’t, you never give up.  Well, my final thoughts for you today; you were a little difficult.  Getting dressed, changing your diaper, eating and going for a walk were all hard today.  You protested and carried on.  The two things I CAN’T ever do with you are brush your hair or tell you ‘NO’, you absolutely hate those two things.

January 31^st, 1995:  This has been a long day.  At 9:00 you went to 2 School and Mama watched you from behind a special mirror.  You weren’t too happy and everything upset you.  When we got home you were cranky and Mama was a little upset with you.  I put you upstairs for a nap and I fell asleep downstairs too.  After almost two hours, I decided to go check on you.  You were on the floor all curled up and in one of your seizures.  I felt terrible because you had been upstairs for so long, I should have checked on you earlier, but you were being so quiet and I was so tired from the day.  I shouldn’t have yelled at you for being different. I’m sorry baby.

February 10^th, 1995:  We were invited to Grace’s birthday party.  Her parents are so nice to invite us.  Everyone from the play group was there.  Her parents were cooking in the kitchen and you wanted to eat, all you said was “I eat”, “I see”, and on and on.  You had a few tantrums so mommy had to take you into the bathroom to calm down.  I was so embarrassed because you were the only one there making noise and making a mess.  When we got home I was so upset with you for not being like the other kids. I’m so sorry for crying in the car.

February 19^th, 1995:  I love you sweetie, no matter how hard it can be sometimes.  I love you because you want to be happy and you do the silliest things just to make me laugh.  It’s hard to be yourself on your seizure medication.  I pray that you will have a future free of medicines and seizures.  I know you will.  I believe you’ll be OK, you’ll be like everyone else someday. 

 March 2^nd, 1995:  Another week has gone by and you have been very sick.  You were also horrible, the worst week of all.  I was sick too and I think you felt so bad that you were trying to make me feel just as bad.  Everything you did was naughty and I lost my patience with you.  It got so bad, I put you in the car and we went to Nonna and Gpa’s house even though they were on vacation.  I thought a change in scenery would help us, but you were a monster over there.  I was so sick of it all and of you.  Daddy called and talked us into coming back home; he said he’d help take care of us better. 

 March 23^rd, 1995:  Time to catch up on the past several days.  We had a little scare last week.  I took you for your blood test last Tuesday and the next day the doctor called because your liver functions were abnormal and your platelets were very low.  It was serious and we had to immediately decrease your medication and watch you carefully for bruising.  The doctor called every day to check on you and we took you back a few days later for another blood test.  Your liver function was better but your platelets were still low. The doctor wants to keep your medication dose low until you have another seizure because of these side effects.  

 April 3^rd, 1995:  OK, baby girl, you are asleep right now so let me catch you up on things.  Last week you had a prolonged seizure that wouldn’t stop.  We gave you your medicine but it didn’t work, so we had to take you to the hospital where they had to give you several different medicines to stop your seizure.  We spent two nights there in the hospital, and you were horrible.  We came home and had to adjust your medication and give you more.  You’ve been pretty difficult at home too since that seizure.  Everything sets you off.  Your tantrums are getting worse and happening a lot more often.  I don’t know why.  I try to keep you busy, but it seems nothing makes you happy.  It’s hard on mommy, but I love you little girl.

 April 9^th, 1995:  Wednesday we met with the ladies from the special education department at the school.  Mommy just filled out a bunch of forms and they watched you and asked a lot of questions.  The classroom was so nice, I think you will love going to school in August!  I’m so excited that you are able to go to school and learn things.  Your teachers are so nice and there will be four of them in the classroom, so plenty of people to watch you and chase you around!

May 6^th, 1995:  OK, crazy girl.  Now it’s time for an update on you.  It’s been a rough week; you are in one of your hyper cycles.  You’ve been having 2-3 small seizures everyday that only last a few seconds.  But, you have been so hyper. This afternoon I put you up in your room because I needed a break and when you were up there you went to the bathroom in your diaper and then pulled out everything and finger-painted the walls and yourself!  It was horrible! This illness is definitely driving everyone crazy, even the doctor can’t tell us anything.  Please hurry and outgrow this.  I can’t stand knowing that at any moment you might have a seizure.  I’m tired, please be good tomorrow little one!

May 21^st, 1995:  Naughty things you say and Do:  You still get into your diapers and finger-paint the walls in your room, you throw everything in the potty (mommy’s makeup, magazines, and paper), you climb on the kitchen counters and table, you say “da dam” and “fu-oo.” You touch dog poop outside in the yard and put it up to your nose and then  in your mouth, you’ve been biting again lately and you open your mouth and press your teeth on people, you grab faces and ears and you think it’s funny, and you wiggle out of your car seat and escape while mommy’s driving!