Like some other parents we met with a child born with Lissencephaly, we adopted the term “Lisskid” as an affectionate term of endearment. Despite their many challenges, these kids seemed to express unconditional love. That was definitely our experience and we strived to return the favor.
Having a Lisskid, or any mentally or physically challenged child certainly comes with mixed blessings and plenty of challenges. As a family, we championed Erica’s challenges and turned them into a positive experience.
Even though it has been nearly three decades since we lost Erica, she still affects how I think and carry-out my day to day activities.
It was also a chance for us to renew our faith. As the saying goes, “God won’t give you what you can’t handle.”
Please browse through our adventures in Story Time to learn how we adapted to these challenges and survived what seemed to be insurmountable odds.
These remembrances are also a shout out to family and friends who showed they cared. Michelle’s sister Cathy and Grandma Rusty were tops on Erica’s list. Thank you!
Lissencephaly means a smooth brain.
She also had Microcephaly, which means that her brain was smaller than average.
Developmentally, Erica was a two-month infant. She sensed emotions around her (good and bad) and responded in a like manner. An example of this was if the sounds or colors coming from the TV annoyed her (literally), she would let you know by becoming a fuss-but. Change the channel to “happy” (something of her liking) and she got quiet again!
Erica also had a taste for music. In particular, she loved listening to Elvis. She had Teddy Bears that sang Elvis songs.
The nurses from her PICU (Pediatric Intensive Care Unit) witnessed this. If they played Elvis, Erica was content -and even giggled when they drew blood -Erica had an infectious giggle.
“Erica seemed to have a sixth sense. She could feel your “vibes.” Erica became a source of inspiration for us and some others who took the time to notice.
Our Own Rainbow
Unless she was physically ill, Erica was always happy. We started referring to her as our rainbow. Therein lies the inspiration: No matter what life threw at us, no matter how bad our mood, there was always a smile and a rainbow.
This was Erica’s gift. In her own way, she showed us the meaning of unconditional love.