We continued on with the diet; three meals a day and snacks. It was a chore each and every day. There were no stops to pick up Happy Meals from McDonalds when we didn’t want to cook. There was no bag of chips we could open up to keep her occupied when we wanted an easy mid-day snack. There were no school lunches she could just “buy” to make our lives easier. None of those things were an option. Holidays were tricky and we sometimes felt it was easier to keep her away from holiday events that were centered around food. When we were at a holiday dinner, the look on her face when she saw all of the food was a hard pill to swallow. It felt awful telling her “no” all the time; sometimes having to yell and literally smack things out of her hand before she put them in her mouth. I’m not sure she truly understood what was going on and it must have been so confusing for her.

Undoubtedly, the diet was just another phase of our journey that we eventually survived but living through it was another story. She continued to be medication free and her seizures were few and far between. They didn’t completely disappear…….there were times that she would get a hold of something she wasn’t supposed to eat. She would grab a chip or snack off the counter and run to her room before I could even process what had happened and by the time I would find her, she had chewed and swallowed. But, despite those occasional seizures, she remained off her anticonvulsants for several years; almost four, to be exact.

Baby Boy wasn’t a baby anymore and when he started preschool I was amazed by all of his accomplishments.  He was so smart and his teachers loved him. He was so quiet, so well-behaved and so compliant……yep, all those things his sister….wasn’t.  Unfortunately, it’s difficult for a parent of a child with a disability to enjoy the accomplishments of their other children for very long, or at least it was difficult for me.  When I would hear how smart HE was, I would smile and say ‘thank you’ and be so proud, and then go home and cry for HER.  When his teachers would tell me how wonderful HE was, I was thankful and happy for a moment and then I would go home and wonder what happened to HER? Why did I keep doing this to myself and would it ever stop?

But, the truth about my Little Man was that HE WAS amazing and despite everything he had witnessed in the home, he was coping quite well.  I tried to compensate for all of it by giving him more attention whenever I could and I was lucky that I had time during the day to spend with him.  Those were the moments that I truly treasured.  I could finally feel like a mom, a “real” mom, not thinking about making the next meal and not watching every move for signs of a seizure.  I attended his preschool parties and activities and watched him just be happily normal, boringly typical and joyfully just like everyone else. I wanted to spoil him and give him everything that was humanly possible to give someone. Honestly, he saved me in every sense of the word and I was beginning to feel….wait for it……happy.

Things were going pretty good for our little girl; we were getting her involved in different activities for children with disabilities. We were even featured on the Houston ABC News Channel for the Ketogenic Diet and we were becoming a reference for other families. At school our little girl was finally able to attend part of her school day with her ‘typical peers and at the age of seven, she attended a kindergarten classroom for the first time. Ms. Josey, Miracle Worker #3, went with her and gave us entertaining summaries of her daily adventures.  At least they were a little bit better than just a year ago, and you had to laugh at some of the things she was doing and saying. I don’t think I could have survived without seeing the humor in some of our situations. Thank you for that, Paula.

School Journal Entries: Ms. Paula Josey (Miracle Worker #3):

August 31^st, 1999:  Ms. Williams said that L had a great day in speech until she jumped onto the nurse’s bed when she went down to get her medicine.  Ms. Williams was ‘so sad’ and all the way back L kept saying “okay, I say Okay” and “I so sorry”.  We were sad that she couldn’t use the computer when she got back, it was hard to keep a straight face when she was saying, “I be good, I say OK”.

September 21^st, 1999:  Oh my gosh, we have had a total meltdown this morning, doing the total opposite of what’s asked.  We have been through ‘Get Ready’ because she wouldn’t come down out of  the loft, then she told me to “shut up”, and finally she threw her cup of ice on me at snack time because I made her get a piece of ice out of her mouth that had fallen on the floor.  I made her pick up every piece of ice on the floor, which was very hard since it kept melting when she tried to pick it up!

October 15^th, 1999:  She was full of vim and vigor when she got off the bus this morning, so far she looks like she feels better than yesterday.  L was the door closer today in Kindergarten and she got to use the “do so” puppets for the counselor when she came.  One of her kindergarten friends was responsible for the mystery jar this week and it had gummy bears in it, but she brought a sticker for L and two erasers.  Well, Little Bit has started to abuse me again.  She hit me twice today and once yesterday, plus she refused to drink her cream again, Maggie had to sit with her until she would drink it.

November 5^th, 1999:  I know L has played chase with Maggie and other adults, but I’ve never seen her play with the other kids here until today.  She even followed their directions when they added some things to it.  She had a lot of fun!

January 24^th, 2000:  L has been in a very good mood this morning, she did well tracing the papers that I gave her, lots of prompting.  Things kinda fell apart in the pm, she was making loud noises and running in Mrs. Steck’s room so she missed five minutes of computer time.  Her medicine seems to wear off at noon and then we have to wait until one to give her the next dose.  Things are really rough at that time.

February 23^rd, 2000:  We had a little problem this morning when she hit at me.  She was pulling lots of tissues out of a box and when I tried to get it away from her, she swung at me with her ‘mad’ look.  We went into the teacher lounge and I made her sit in a chair.  She kept trying to grab things the whole time and saying “look, look”.  She was also doing that squealing thing.  After about 15 minutes, I told her she would have to show me quiet before we could go back and she said “shhhhh…”  she finally sat quiet for two minutes and we went back to class.  The rest of the morning has been shaky because she doesn’t want to comply much and she even laid out full body on one of the tables and when I let another student use the computer for good behavior, oooh she was mad! The med times are working better, but you never know, some days are better than others.

March 8^th, 2000:  Got off the bus yelling “no” at us this morning and went downhill from there.  By 9:30 we had to leave kindergarten and go back to Andrea’s room, she had tried to put a rock up her nose in the hallway.  Did she have her medicine this morning?

May 10^th, 2000:  That was fun to see L on TV last night.  She’s a star over here!  She must have felt good to get all that special attention just about her diet.  She will probably help other kids that have bad seizures, help them learn about the diet.  You guys looked great on TV too, it was cute when you rode the train and waved at the camera!

May 23^rd, 2000:  Maggie went to a workshop and a woman suggested these squeaky toys to put in L’s shoes to help her walk on her heels and not her toes.  So, she picked up a pair and L had them on today.  Everyone was looking out their doors to see what all the squeaking was about, L thought it was hilarious!  Happy Summer! Hope you don’t hate us for sending her home with her squeakers!