Thursday, October 06, 2005

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.”


Blogger The Field Family said...

I don't have a special needs child but I am in the process of adopting at least one. Thank you for sharing your experience with us. I look forward to reading more about Jenelle...and her mother!


4:14 PM  
Blogger Sarahlynn said...

Kelly, thank you for sharing Jenelle's story, and yours. Also, welcome to Postcards from Holland!

I know exactly what you mean about Welcome to Holland. I found it on the Internet and loved it. But after we started telling family and friends about Ellie's prenatal diagnoses, people started forwarding the essay to me. And I began to hate it just a little. I think it helps to seek it out; to be in the right frame of mind to listen to a *positive* spin on what our lives have become.

But it's impossible to be positive all of the time.

8:16 PM  
Blogger trisha said...

Thank you for sharing, Kelly.

Something about your words really touches me. Kindred spirits, perhaps.

3:04 PM  
Blogger Emma said...

Hello Kelly,

Welcome to Postcards from Holland! I am a little different from most people here as I am the (now adult) child with the disability/health problem. But as a lifelong resident of "holland" I could relate to so much of what you said. I too believe that my disability helps me to be the person I am. And I understand the Postcards from Holland thing too, I've not had that with that specific piece but others.

(((hugs))) to you and Jenelle, looking forward to getting to know you better!


12:03 PM  
Blogger Shelly said...


Oh Welcome to Holland has worn out its welcome at my home. Despite so many people shoving into our faces, mean well, we are sick of it. Let them experience Holland for awhile and give us a break.

I noticed you are from So am I. We use CHLA as our hospital.

Shelly and Sean

9:47 AM  

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