CDKL 5 and ME…

Posted Monday September 17, 2012 by thehowardhouse

Having A Child With Special Needs Has Made Me A Stronger And More Patient Individual

Yes, I have more patience than I used to! :)   Circumstances have forced me to recognize my situation is bigger than I am and that I need love and support from everyone I know… and don’t know.

The creation of Hope4Harper was a collaborative effort and has provided me with the opportunity to increase awareness about Harper’s rare disorder of CDKL5 and its common symptom of Epilepsy.  The goal in starting this organization and finding a doctor to head our CDKL5 Epilepsy Research is to find a way for Harper to have a better quality of life with better control over her seizures with the HOPE of this benefiting others with not only CDKL5 but Epilepsy as a whole.

“I’m so very ordinary, nothing special on my own.”  My name is Penny.  I’m 35 years old, the oldest of three sisters, and mother of two daughters: Lily Kristen, age 4, and Harper Elle, (CDKL5 survivor) age 2. I am married to Dustin.

My parents divorced when I was very young.  But, despite their separation they remained united when it came to raising me. In the High School band I played alto saxophone and I was in color guard. I graduated, went to college, and afterwards married and had my first child five years later.

I Believe I Felt Her First Seizure in Utero

Two years and four months after our first daughter, I was blessed with another and had no idea she would completely change the direction and dynamic of my entire life.  In hindsight, I believe I felt her first seizure in utero. At the time seizures were the furthest thing from my mind as we have no family history of disability.  I believe seizures were seen again the day she was born as I watched her stare so hard I didn’t think she was mentally with me.  Finally at end of 2 weeks old, we had relatives come to visit and they held her all day long and pointed out the rhythmic movement at which point I knew without a doubt it was a seizure.

Initially I was devastated of the unknown!  I cried every day because I did not know how to help her or how to make sure she understood I was doing everything I knew to help her while I felt like I knew nothing!!!  Now I know she is an exceptional little girl who has much to share with the world and it is my job to help her be able to do so.

It Weighs Heavy On My Heart to Know That This Burden Affects The Entire Family, Lily

My journey is ever changing and sometimes I feel like “hiding away from the madness around me.”  It became very hard for me when Harper reached 12 to 18 months old because we knew what we were dealing with by then. I was putting Harper, who could still only perform the tasks of a 4-month-old into Lily’s hand-me-downs and remembering where Lily was developmentally when she wore those clothes.

This is still hard for me but it gets easier to cope with as time passes.  I feel like I am doing laundry and dishes all day.  I hate my kitchen because I have to cook so much special food for Harper.   As Hope4Harper moves forward I often times think “why me?”  As Dustin and I start to formulate our special needs trust, something you WILL NEED if you have a child with disabilities, it gets even more heartbreaking.  Our circumstances have made mine and Dustin’s relationship stronger but please do not take that as though it is all hugs and cuddles.

So What Is “normal?”…It’s Your Life!

“Weary mother, broken daughter…, you’re not alone.” Your life story, although different in details is no different than mine, irrespective of what struggle you carry.   I am like every other mother regardless of your child’s abilities or family dynamic.  All I want is to raise my children to be the absolute best people they can be and to know that I fought has hard as I could to make sure that opportunity was provided to them.


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