I’m a single mom and adopted Katie from India when she was about 12 weeks old. She weighed 5 pounds at 12 weeks but did amazingly well, showing an early aptitude for music when she “found” Mary had a Little Lamb on the piano at age two. Even though she had increased tone on her left side, Katie did well in school, ran track, played basketball (until her Calcutta genes won and she quit growing at 4’11”), sang in a local youth choir and select school choir, and was an honor student. The summer before her senior year in high school she became ill and developed what turned out to be partial complex seizures that have never been controlled.
The journey we have been on for the past 15 years has taught me to hold loosely to expectations, to enjoy the good days (which most are), and to learn to say good-bye to the life I thought I would have, and to embrace the life we both have been given. We have met some amazing people on this journey and are continually supported by our wonderful healthcare team and our many close friends and family. Katie has persevered through several seizures a day, volunteers for Focus on the Family and manages a Facebook page. She is searching for a work from home job now that she has a certificate in social media marketing.
My thoughts for other parents and family members with a child who has uncontrolled epilepsy:
- You don’t get to choose, so learn what you can and move along with your new life.
- Reach out, both for help and to help others.
- Maintain what is most important in your own life and make sure you take good care of yourself and your other family members.
- God still has a great plan for your child’s life and your life; it is just a different plan than you thought.
My best to all who read this,