debbie-maddie

Portals into a Mother’s Heart

There are distinct portals into a mother’s heart – specific things that touch, compel and drive a mother with regard to their children. Similarly, there are portals into a special needs mother’s heart, things that are uniquely very tender spots for her. To understand them, we first need to recognize what they are, before we can recognize the emotion – passion and/or anguish behind them.

 

What do mothers want?

To have perfectly healthy children that can embrace life and be all that they want to be. The mother likely has a roadmap in mind as to what that life will look like. Depending upon the gender of the child, it will look different. If the mother has a little girl, visions of princesses, frilly things, friends and dance will likely dominate. If the mother has a boy, visions of sports, adventure and the outdoors will likely prevail. These are the norms if one grew up in America over the past 50 years. This is the way that most of us were raised and what we were taught to expect or value.

 

So, what is different for the mother of a special needs child? Nothing really, except a hefty dose of heartache. The mother of a special needs child also had a dream for a perfectly healthy child. She also had plans in mind for a future and a hope. If she had a girl she, too, likely began visioning her baby girl as becoming a graceful princess…maybe even a ballerina, and surely being surrounded by friends.

 

The difference for the mother of the special needs child is that her dream was shattered, like a piece of glass that slips through your fingers and lays strewn on the floor.

 

When the dream shatters, the natural instinctual reaction is to bow down and to inspect the pieces of broken glass or life, as it were. It is at that point or soon thereafter that a choice has to be made…either to sit amongst the ruins and destruction…defeated or to rise and overcome, choosing to re-arrange the broken pieces into a beautiful mosaic of brightly colored glass…a future in this case.

 

Let us not lose sight of this. We are dealing with a dream. A cherished dream. A broken dream. All mothers can identify with this.

 

This is what the Children’s Cerebral Palsy Movement (CCPM) is about…People who choose to pick up the broken pieces and to rearrange them into something of beauty – where hope and promise resonates.

 

About the Author

Debbie Fragner is the Founder and Executive Director of Children’s Cerebral Palsy Movement.
Debbie’s daughter, Maddie, was born in 2006 with Spastic Diplegia, Cerebral Palsy. Having been a zealous advocate for her own daughter, Debbie has chosen to now stand in the gap for all children with Cerebral Palsy, to give them a future and a hope for a higher quality of life.
Based on her daughter’s dream to learn to dance ballet, a physical activity previously thought impossible for many children with Cerebral Palsy, Debbie went on to spearhead an innovative therapeutic dance pilot study. Envisioned by Debbie and designed in collaboration with Sofia Valenzuela (Physical Therapist), Janine Paulsen (Dancer) and Kim Caputo (Dancer), the efficacy of this innovative protocol was tested via a pilot study that included the University of California, Irvine, Chapman University and Children’s Hospital of Orange County’s Orthopaedic Institute.
This study will result in no fewer than five scientific papers being published, that we believe set the trajectory of proving that Cerebral Palsy is a diagnosis, not a destiny. Additionally, with these papers, we hope to compel the National Institutes of Health to fund future therapeutic research that could begin to reshape the way rehabilitation is handled in America for people with Cerebral Palsy.

With a successful pilot study now behind her, Debbie’s passion has shifted to developing programming that proactively seeks to bring Cerebral Palsy children and their families out of isolation and into community, all while improving their quality of life and long-term function.
She is a graduate of UCLA, with a Bachelor of Arts in Business Economics and has more than 23 years of professional mid-level sales management experience for Fortune 500 companies like Starbucks, Walt Disney and Nestle.