As some of you may already know from my previous articles, I am the mother of a pediatric stroke survivor. Due to brain trauma from the stroke, my daughter has special needs. The day she was born was the day my life became intertwined with the special needs world of prescriptions, paperwork, doctor appointments, and physical/occupational therapy. Along with all of the obligations came the whirlwind of emotional adjustments.
I am the type of person who asks, “Why is this necessary?” or “How can I find out more on my own?” Some call that resourceful, others call it irritating. Either way, I will immerse myself in digging up more information. This benefits me in many ways. For example, after some research on the internet, I was led to a non-profit organization for pediatric stroke families (CHASA). I finally did not feel alone with my fears of the many future scenarios that played in my head. It turned my despair into one of hope and solutions. So began my activities within the special needs communities.
My book about Naomi also stemmed from a frustrating search to purchase a special needs book that I could read to her brother, Stefan, who was eight at the time. I could not find a reading that really got to the heart of the emotional, mental, physical, and spiritual essence of someone who has developmental delays. I wanted a book that my son could relate to, as his new world now included a little sister that almost didn’t survive. Instead of giving up, I decided to write my own children’s book that would educate others about medical conditions while instilling compassion. That was the day I wrote I See You, Little Naomi.
I was once advised to take the first step without expectations of the outcome (which I am horrible at doing). Deciding to step over my doubts was a blessing. Through my family’s outreach efforts, we are now on the board of a non-profit called inClusionClubHouse, whose mission is to build a clubhouse where special needs individuals and the mainstream population can join together. Since my involvement with their fundraising events such as the Special Needs Prom, I have happily taken on the task to expand that mission to the East Bay. To network with other special needs families in my area, I formed the “It Takes a Village” group through New Hope Church in Concord. My hope is to connect with people who may be struggling, and tell them that they no longer have to feel like an island.
Tests in life are inevitable and worrying that one’s child might be stereotyped, bullied, or misunderstood, is quite common. It’s even more intense for those with a loved one who has endured medical setbacks. What better way to turn a test into a testimony by building a community where the mainstream and special needs are included on this journey?
It isn’t always easy. It is a rollercoaster ride, but our tests are always transformed into testimonies once we take that first step toward healing. Just trust the universe’s process to turn a mess into a message. The saying, “Let go and let God,” could not be more appropriate.
Hopefully you will be able to join me in letting go of the outcome, for sanity’s sake. We all have something to offer, including our special loved ones. The best things offered are given from the heart, and what we give away, the universe will give back. We remember the tests, but live in the testimony through our actions and growth. May our special ones be encircled with understanding and inclusion. Remember that we all need support sometimes because, “It takes a village.”
Stefanie Boggs-Johnson is the Northern California Facilitator for inClusionClubHouse and published author of I See You, Little Naomi and soon to be released I See You, Little Andrew. Her educational children’s books promote special needs awareness and compassion.
For more information, please visit inClusionClubHouse.org or her Facebook page @ItTakesASpecialVillage.