Rising Above Pediatric Stroke: A Mother’s Inspiration

Guest blog post by Stefanie Boggs-Johnson

It was March of 2009 and my daughter, Naomi, had made it to full term with no issues. However, unbeknownst to the doctors and me, she had an in utero stroke at seven months gestation. She was born having multiple seizures per hour and was not expected to survive. When she was three days old, a magnetic resonance imaging (MRI) scan showed severe brain damage and I was told she might not have a high quality of life if she even survived. However, I believe there was another plan for Naomi. She did survive and is living with a quality of life much different than what the MRI suggested.

Now at five years old and diagnosed with mild cerebral palsy, Naomi has only mild delays in development and is thriving. She walks with the assistance of an ankle-foot orthosis (AFO), speaks (quite lively, I might add) and is sharp as a whip. She continues to astound her occupational, physical and speech therapists– as well as our entire family!

Naomi school pic 2014 - standing

As an outlet from Naomi’s unforeseen event at birth, I decided to write a children’s book, titled “I See You, Little Naomi,” with the goal of educating children and the public about the existence of pediatric stroke. More importantly, I wanted to teach children about people with special needs. I wanted to instill understanding through this book because, with understanding and knowledge, there is compassion. If there is any way Naomi’s testimony can lessen fears or misguided assumptions and give hope to other people who may go through similar trials, then my goal is accomplished. Making it through this life’s trial has resulted in a spiritual, mental and emotional metamorphosis in so many positive ways for me and my family. My hope is that her story, with the challenges and triumphs, may do the same for others.

It is a difficult trial for any parent to see his or her child go through a medically traumatic event or born with a medical complication.  My family and I were introduced to the world of special needs where there are many appointments, documents to sign, meetings to attend, and various activities and schools to carefully consider.  After navigating through these challenging times with my daughter, I have become inspired to acquire my cosmetology license.  I would like to have my own salon and be a mobile cosmetologist. My daughter’s triumphs have become her testimony and anchored my passion to give back to others.  Making hair appointments takes a lot of time and attention and I believe mobile cosmetologists can be a huge help to other families in situations similar to mine. I will graduate from beauty school in May of 2014, which coincidentally is Pediatric Stroke Awareness Month. I will proudly wear my purple ribbon to help spread awareness for pediatric stroke, as I and many others who have experienced pediatric stroke in their families have much to celebrate– the strength of our young survivors!

Naomi will enter kindergarten soon. With the strong-minded, determined and brave character she has shown so far, my family and I know that she will continue to deepen our love and faith in the best to occur. She has shown us that, regardless of any challenges to come, we must never give up.  Naomi is a survivor that continues to defy the odds—and for this, we are forever inspired.

Stefanie is from Concord, California and the author of “I See You, Little Naomi.”

For more information on pediatric stroke, visit Children’s Hemiplegia and Stroke Association’s website.