Meet my Jenelle

My name is Kelly, and I am a married mother of two who also works full time as a litigation paralegal in a large law firm. I found my way here because our youngest daughter Jenelle has special needs. That sentence seems so simple and yet there is no easy or simple way to describe my child. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

please read more about Jenelle's Journey
Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive issues that did not surface until recently. Developmentally, she cannot sit up, does not use her hands to hold anything and does not talk –yet she makes babbling sounds and started gracing us with giggles this last May. She will be 3 later this month.

Jenelle was born at 37 weeks via planned c-section after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks and was primarily caused by a kidney infection that I had at that time. I was put on Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists soon followed. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. Jenelle finally gained seizure control sometime in late July 2005. We aren’t sure what is working exactly but we’ll take it.

I remember the first time I read “Welcome to Holland.” I cried for hours and understood the beauty in its message. It helped me to come to terms and realize that I needed to be positive and strong about things for Jenelle and my family. I also remember one stressful day when a well-meaning friend left a copy of “Welcome to Holland” in Jenelle’s cubby at school. It was the first time I really “hated” reading it, though for the life of me I can’t remember exactly why. I remember that I wanted to scream, “Holland sucks and I want a refund! I want to be in Italy drinking wine and buying leather shoes like I planned! Where can I file a complaint against this fricken airline, and how can I get my money back!” I know each and every one of you has felt this way too.

So, thank you for including me on this blog. I’ve been writing updates about my daughter since her seizure diagnosis over two years ago. It is very therapeutic for me to put things in writing, and I hope that by sharing those thoughts with all of you I can help you see that you are not alone. They say the first year with a special needs child is the hardest, and I wholeheartedly agree. I’m not sure if things really get better or seem better, or if we just have to take a year to learn the ropes and understand. Today I feel as if having my daughter makes me a better human being. I hope you feel the same. Thanks for reading about us and best wishes to all of my fellow citizens in this land called “Holland.”