May is Pediatric Stroke Awareness month and it is symbolized by the purple ribbon.
Pediatric Strokes are no joke and my daughter, Naomi, survived one while she was still en utero. There are many scenarios on how, when, or why a child has a stroke, but for my daughter, they don’t know why it happened. I had a normal pregnancy and two weeks before her due date I went in for a check up and ended up having an emergency c-section. As they lifted her out of my body into this world, she immediately had multiple seizures that caused her to stop breathing (asphyxiation). She almost died. It was the most awful experience I have ever had in my life, and trust me, I have been through some tough stuff.
My child, like so many other children that endure a stroke, is a walking miracle and is the reason why I began writing to promote special needs awareness and inclusion. These children that have to endure something so awful do not deserve to grow up ostracized or stared at by others. My deeply-embedded experiences of being bullied as a child were the basis of fears I had for my son, who is mainstream, and for my daughter who has delays that aren’t apparent until you interact with her. I am sure the fear is even deeper for those who have loved ones whose delays are physically visible.
I did not know her future then and I do not know it now. Only God knows and plans the healing to provide for her life chapters which will be her story to tell. I cannot control others nor the blueprint God has for my children’s lives—but I can set an example and provide boundaries in my home. Boundaries that exemplify that all children, when they step out that door and into the treacherous waters of this world, must not accept anything less than love, kindness and understanding. Isn’t this why all ribbons exist? Isn’t this why when you put two ribbons together it makes the shape of a heart or a butterfly? Yes, I said it—butterfly. I promise I won’t bring up bunnies.
Seriously people, the ribbons of awareness are showing others the heart of the matter. I want the world to not look through eyes that lack compassion or lack of tolerance for those who may not meet whatever shallow standards a society may set. I want each of us to get over ourselves and see that the universe has a bigger plan. These plans cannot be put into a box and neither can you.
So many ribbons are pinned on shirts, printed on shirts and other memorabilia. It is because these memories of what individuals with medical setbacks have endured will forever be etched in their brains and their loved ones. It must never be forgotten that just because one may not have the same experiences, it does not mean that one day you will never need a flock to keep you going. None of us are exempt. This is for any special need and is not limited to something that causes developmental delays. This pertains to a need that is special because it requires an acute focus to overcome the trials so that this life is lived productively. Life is productive when it is lived with acceptance, tolerance, patience, kindness, joy, and love.
Whether the special need is physical, mental, emotional or spiritual, it must be faced in order to be healed. Don’t let the fear of a stigma become the reason for a lack of action. It is not about trying to control the outcome. It is about putting the best foot we can forward so that our part in the process—our actions—are the testimony. A ribbon is what sparks the conversation to teach about a medical condition but our steps are what paves a path for education, compassion and most importantly, change. Every single one of us has a purpose for existing and the multitude of the reasons for an existence should never be compared or ignorantly categorized into what is or isn’t worthy. We all have a story to share with others that can induce a new and positive outlook.
“May” this article, and the topic of the purple ribbon and pediatric stroke, lead you in the right direction. “May” knowledge of what truly matters be what steers us. “May” we all never except anything less than the best for ourselves and our loved ones.
For more information about Pediatric Stroke, please visit CHASA.ORG or
PEDIATRICSTROKEWARRIORS.ORG
Stefanie Boggs-Johnson is the mother of a pediatric stroke survivor and is the Northern California Facilitator for inClusion ClubHouse. She is also the published author of “I See You, Little Naomi” and “I See You, Little Andrew”, educational children’s books which promote special needs awareness and compassion. For more information, please visit inClusionClubHouse.org or her Facebook page @ItTakesASpecialVillage.
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