As a mom you always see the future in your children's eyes the minute you hold them in the hospital. For me, this was so very true and things seemed to be going just as I had seen in those beautiful brown eyes of my daughter Hillary. Then one day when she was just seven years old she came home from school with one of the most imaginative stories I had ever heard, or so I thought. I began to keep track of these stories and then proceeded to the pediatrician to see what they thought. I already had an idea in my mind, as I was a pediatric physical therapist assistant at the time in a school designed for children with special needs, and my feeling was correct. Petit Mal Seizures, the hardest - it seemed - to explain to people and children. Now, my entire world would change and more so that of my daughter's. Some of the activities she loved so much would eventually have to be discontinued and many adjustments would have to be made in our lives, hers, and her brother’s.
We proceeded to go from doctor to doctor seeking the proper diagnosis and treatment. The road was not only scary and very bumpy, but also difficult to come to terms with, as this time it was my daughter and not one of my students.
Many nights were spent sleeping on the floor while holding her hand as she was afraid. There were many days that I would need to leave work early to pick her up from school because she was often having seizures before getting on the bus to come home from school. This was quite a challenge not just for Hillary but also for my job, and me. This became quite stressful. I never wanted her to know how upset I was or to ever see me cry. It is very difficult to see your child in pain and struggle with so many aspects of her life.
Educating the teachers at school and her classmates was now my mission so she could get the care she needed, and so the other children could understand that it was "OK" to be her friend. I must say the children were terrific; the school system posed a bigger challenge. We overcame them, but not without a fight.
As time would pass, we would overcome hurdle after hurdle, hospitalizations after hospitalizations, with a determination deep inside me that this will not ever stop her from doing what her heart desires. She would soon graduate high school, move on to college (a three hour drive from home), and to eventually live on her own, knowing there is nothing she cannot accomplish.
Our motto quickly became, “Stuff happens, so just step over it and keep on going.” I tried to give her every opportunity to have a “normal” life in every way possible, and to show her how to be her own self -advocate for whatever she needs. This is not to imply that I never had a melt down or became frustrated because I did, but I strived to keep strong.
I will never forget Hillary's sophomore year at college. Her seizures were out of control, and I would spend many a night driving up to her in the late hours. My husband frequently traveled for business and was often away when these episodes occurred. The first time I got the call that Hillary was unconscious, I immediately got out of bed, jumped in the car and began to drive. I called my son to meet me, thought he lived in Boston at the time. He too would make this trip many times for the next two years. To say I was upset is to put it mildly. I cried all the way, three hours seemed like 10, and now I am on the wrong road. I pulled into a gas station where there was a police officer who now looks at me, a very upset woman in, yes, pajamas. I was so embarrassed. He then escorted me to her school. At the time, all I cared about was being by Hillary’s side. Now we can laugh about it. We would survive this, only more calmly, as days and months went by and clothes left out at the bedside.
Driving home from one of Hillary’s doctor appointments, my husband and I were upset after receiving some disappointing news. Hillary demanded to pull over to the side of the road and as my husband did she boldly said, "No more tears. We can do this and we will. Right mom!?!” Our children teach us as much as we teach them, when we truly hear what they have to say. That day I heard more than just those words. It was at that moment that I could once again see her future as I did in those big brown eyes on that beautiful August afternoon the day Hillary was born. To let you know, my dear Hillary is a very successful, beautiful adult.