“So please excuse the tears that fall when I look at you sometimes; I’m only crying for the dream that left me years gone by.” Poetry and writing were my therapy….my escape….my medicine. Expressing myself in this way helped me deal with many of the emotions and questions I had regarding everything going on with my little girl. One of those questions running around in my mind was; where do we go now?  Now that we know the Truth what do we do with it?  How do we follow the road to happily-ever-after now that it’s broken? I just knew I had to do something besides shedding tears and blaming myself.  I had to pick myself up for the sake of my baby boy and my little girl, they needed me, and they needed a mother that was there for them.  I confess that I swam in a sea of self-pity again for months after her diagnosis, sighing “woe is me” many times. I secretly wished she had some kind of physical handicap or Downs Syndrome or something so people would feel sorry for me and actually “see” her disability. I sat behind the steering wheel with images of driving into a tree somewhere and just ending all the pain.  I had visions of my hands around her neck……Yes, I’m admitting it, those thoughts crossed my mind plenty of times; I’m not ashamed to reveal them, but it’s what I did later that defines me now, not those thoughts or visions.

I couldn’t be the ONLY mom going through this, surely there were hundreds, thousands, maybe more and I wanted to somehow reach out to them. Were my feelings the same as theirs?  Did they live with GUILT and did they cry out when faced with the Truth?  Enough of the self-pity, I made myself tie yet another knot in my rope and I went searching for ‘the others.’ I learned that there were many parents out there, just like me.  I found a home with the Epilepsy Foundation and started a support group in my area so I could meet them.  I was  excited about this new adventure and it occupied my time and my mind.  I was finally thinking about something other than MY problems and I met some wonderful people who helped me discover where the broken road can lead you. Sometimes when faced with a challenge you have to take a leap, other times a step will do just fine.  This was just another step.

Helping others became my new mission.  Nobody chooses my destiny for me; I choose to make my own. The next few months of our lives were a little better despite behavioral setbacks and continuing seizures.  Maybe I was coping and understanding things better, but they seemed better.  My questions of who would love and accept my little girl were answered every day as she walked into the doors of her school.  Her teachers continued to make small strides with her and she was learning to read, write, and behave more appropriately. Her brother continued to amaze me; talking and walking earlier than the ‘norms’.  It was a better time and I started to realize that my attitude was greatly influenced by my thoughts, so I tried to wake up each morning looking forward to the day and not dreading it.

Things didn’t miraculously change all of a sudden, don’t get me wrong. It was still a crazy, hectic, insane life.  There were two kids in diapers, daily medications, those awful seizures, living paycheck to paycheck on one salary, and trying to stay positive from sun-up to sun-down.  It was a chore.  I still kept many things to myself and put a smile on my face whenever I was around others.  These were my problems; I’d deal with them on my own and not burden anyone else.  Even during support group meetings, I listened to other parents share their stories of grief and hardship but I kept mine to myself.  They don’t need to hear my problems; they have enough of their own, and so on.  GUILT was still managing to keep me down. But, at least now I was building a network of support. Just knowing that there were others out there with similar problems helped me make it through many of the bad times that were still yet to come.

Journal Entries: 

August 17, 1997:  It was an OK weekend. You were a little more irritable and your Ritalin took longer to kick in but we said our prayers tonight and when I asked you who you loved you said, “Ms. Grove, Ms. Josey, Ms. Stephens and Ms. Cotton.” I thought you were going to say mama! You also said, “I can’t hear you, use your words.”  You love your teachers. 

September 3, 1997:  Well, you’ve been sick lately so we went to the doctor but he couldn’t find anything….but you are on antibiotics again. You have been difficult, very hyper, jumping around, knocking things over. You put your face in front of Sam’s swing and got a fat lip and scractches on your face. 

November 20, 1997:  You were up early this morning and wound up tight! You’ve been sick again and we have had lots of bad behavior (climbing on the table, grabbing things). The doctor gave us a new medication called Tranxene to use to prevent seizures while you are sick. Every time you are about to get sick, you have a seizure and when you have a temperature. But, this medicine is supposed to make you sleepy, of course you fight it and you’re hyper. 

December 1, 1997:  Wow! What a long weekend and Thanksgiving was quite a trip! When you weren’t stripping or sticking your hands in the pumpkin pie, you were on top of the kitchen table with your hands down your pants singing the Aggie song at the top of your lungs! When Nonna and Gpa left they had big smiles on their faces. Probably happy that they were leaving! I just plopped down with a glass of wine!

May 1, 1998: I haven’t written in so long! Your brother is 2 years old now. We had a big party with 20 people for him and Jake in the backyard on his birthday. You really were good and you just kept to yourself most of the time. You would blow bubbles and walk around the yard singing Barney songs. You are still riding horses and you love it. We were there yesterday and you had a seizure. You were getting hyper and started grinding your teeth and walking around the stables. It lasted about 20 minutes. We took you home to get the valium in you. I’ve been going to conferences for the Epilepsy Foundation and I started meeting some other parents that have children with seizures. So, it’s been pretty busy around here. I’m even going to start working at Wal-Mart in a few weeks. Our neighbor is the manager there and he is getting me a part-time job in the shoe department. It will be good for me to get out of the house and I will make some money so we can do more things and pay more bills. I hope you will be good for your daddy. That’s the only thing I’m worried about!