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Stefanie Boggs-Johnson

Shining Bright Through Music

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A Red Crescent moon is a rare occasion that many people miss when it occurs. For others, it is something they are faced with on a daily basis who must adjust accordingly; these are the individuals diagnosed with Sickle Cell Disease.   

Sickle Cell Disease is a heredity group of disorders that causes red blood cells, which carry oxygen through the body, to become misshapen and break down. It causes normal, circular-shaped red blood cells to take on the shape similar to a Red Crescent moon. Due to this shape, theses cell can get stuck in the small blood vessels, which can slow or block blood flow and oxygen to parts of the body. Some adolescents and adults with Sickle Cell have chronic pain, bone and joint damage, ulcers, and even strokes.

One such patient at Children’s Hospital of Oakland named Khaleiya was diagnosed with sickle cell at two weeks old.  Now, at age 11, this beautiful young girl’s life consists of regular hospital visits that include blood transfusions, multiple medications, and pain-crisis therapy.  Due to many days of not being able to attend school, Khaleiya is homeschooled and is blessed with emotional support from her mother, Jennifer, and 14-year-old sister, Haloniee. 

Inspired by her daughter’s strength through the medical trials, Jennifer decided early on that, “My daughter may have Sickle Cell but Sickle Cell does not have my daughter,” and contacted Children’s Hospital in Oakland. It was through their Children’s Network Foundation that her passion for awareness took sail. Her daughter, Khaleiya, was featured in educational videos and pamphlets along with her mother’s public interviews with the local radio stations such as KBLX.

It was through her tenacious networking that she met Mickel London back in 2014.  As a marketing manager during that time for Costco in Concord, California, Mickel added his creative talents to fundraising, beginning music events to raise funds for Sickle Cell research. Appropriately titled Music Medicine, the event has included performances by local and well-known musicians such as American Idol’s Latoya London. This year Music Medicine will bring Maxine Jones from EnVogue to the stage. 

Just like the notes coming together to provide joy, so did Mickel and Khaleiya’s family join forces to provide awareness along with hope for so many children afflicted with this disease. 

Music Medicine has raised thousands of dollars for Children’s Hospital of Oakland over the past ten years with 100% of the funds raised being donated to the hospital to help provide care for patients. As a non-profit, the U.C.S.F. Benioff Children’s Hospitals provide medical care to their young patients, whether they have insurance or not. The coping and healing that occurs 24/7 within the walls stems from a deep love for the many little ones who face significant medical challenges.  

To get to know Khaleiya, her family and the many passionate advocates such as Mickel, who strive to help ease at least some of the spiritual and emotional pain, was and is, an honor. They are part of a village of strength, drive, and unbreakable love, delivering a much-needed kind of medicine to those who need it most.  

Khaleiya advises other children diagnosed with Sickle Cell to, “Pray to Jesus; to stay strong and know you’re not alone.” It is advice that resonates for every newborn, child and adult.  Through the Music Medicine event happening on June 29th, her advice will echo along with the songs dedicated to an inspiring group of people, who, despite the forces that be, will always reach for the moon that shines the brightest in the darkness. 

For more information about Sickle Cell Awareness and UCSF St. Benioff Children’s Hospitals, visit https://give.ucsfbenioffchildrens.org

To purchase tickets for the 10th Annual Music Medicine on June 29th at Empress Theatre in Vallejo, California, visit www.EmpressTheatre.Org

Purple Ribbons

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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.

NAMI: Filling The Voids

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When I first began writing articles to promote inclusion for the special needs community, I had those with intellectual or physical struggles as my focus. However, as I am introduced to so many topics of concern within this arena, I have learned that a “special need” is an umbrella term for so many human struggles. 

I was recently introduced to the topic of mental health and the representatives of a national non-profit, National Alliance on Mental Illness (NAMI).  As they explained their goals of being a part of the preventative awareness of mental health illnesses gripping our country, I was awakened to the realization that special needs also includes spiritual, physical, emotional, and mental well-being.  As I listened to one of the representatives, Graham Wiseman, share his story of losing his son to suicide and turning that deep pain into a passion by going into our local elementary and high school classrooms to educate about suicide prevention, I asked to schedule a time for me to visit one of their offices located at Todos Santos Plaza in Concord, California.  I was in awe at the various education courses they offered to families and individuals struggling with the effects of depression, bi-polar disorder, PTSD, schizophrenia, and other disorders. Taught by trained volunteers, these workshops are offered at no cost to those who feel lost and alone as they face medical paths and an influx of adjustments for their loved ones. 

Founded in Madison, Wisconsin by Harriet Shetler and Beverly Young, whose sons were diagnosed with schizophrenia, they joined forces and began to seek out others who were going through similar experiences.  The high number of attendees at this first meeting eventually led to the formation of NAMI in 1979.  NAMI is part of the many small steps to help grow the awareness by providing education, resources and connecting families to support one another. It offsets the state of our world, which has reached a whole new level of strife that stems from the many special needs of individuals not being met at local and federal levels. The void that exists, as homelessness, suicides, mass shootings and incarcerations without rehabilitation, continue to grow, is being diligently filled through the caring efforts of this organization. 

It begins with teaching about the signs of a potential mental health issue along with advocacy and a genuine heart to fill the voids that so many people try to mask out of fear of stigmas.  The missing link to heal an ailment begins in our homes and in our classrooms and NAMI has made this available within many communities. 

Those interested can visit the website below to find out more. You may also sign up for their free programs that include: Family-to-Family, NAMI Basics, Mental Health Crash Course, and The Family Network. These courses and meetings offer crucial information.  Most importantly, they offer access to a community of people who can relate to one another. 

May is Mental Health Awareness month but every day is an opportunity to learn that we are never alone with our struggles. “May” the void of despair no longer exist as new strength is formed by from connecting with others.  If you are struggling with how to start connecting those dots, NAMI’s doors are open for you become a part of their village.  NAMI CC is here for you.

NAMI Contra Costa County: www.namicontracosta.org

2151 Salvio St., Ste. V, Concord, California, 94520 Office: (925) 942-0767  or  (925) 465-3864

Email: info@namicontracosta.org

A Night to Shine

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I recently had the honor of being a part of an event. This yearly extravaganza occurs in over 500 locations across the world on the same night. Although thousands of teenagers from all walks of life look forward to this same type of celebration, what made this day in February so special was the needs it fulfilled. Sponsored by the Tim Tebow Foundation, it is a prom for young men and women of all abilities—the community of special needs.  A “common unity” that should always exist and is gaining momentum in miraculous ways, the Night to Shine Prom is the party of the year where everyone gets to shine. 

As a mother of a beautiful young girl who has mild cerebral palsy, the path of her future seemed so treacherous in the beginning. I learned that life can go “topsy-turvy” in a blink of an eye as many families can attest. The visions of a future filled with sports activities, dances, graduations and weddings was stolen as we were given a limiting outcome by the medical world.  Stripped from our loved one, or so we thought, was the potential joy of participating in common activities. Parents in similar circumstances might never imagine, during the darkest moments of a trial, how much light was going to form to help us see a bit more clearly. 

Side by side with our child, we continue to be led to a path of some fabulous roads of healing and rejuvenation.  As much as we can feel “disorganized” with trying to put all the pieces together, along comes an “organization” like the Tim Tebow Foundation to help everyone feel like kings and queens.  Most important is the grounded message that our children have always been worthy—since the day they entered our world. 

The day began early for me since I had excitedly signed up to assist for multiple volunteer opportunities. My abundance of eagerness to change the world in a day was going to be accomplished through my tireless charity of actions (or at least try!).  If I can’t change the medical setback that happened to my daughter, at least I can be a part of the flock that wants to assist in making this world a nicer place.

The evening added another moment that was an amendment to my child’s life, changing one of my many worries into humble hope.

I have learned that changes never happen when we want, but changes happen when we need them. With patience I hope to one day see the droplets of positive changes finally filling up that cup. This was one night that the cup overflowed as I watched dozens of people help prepare for the excursion. 

I got to apply make up for the women and children attending, and I saw their expressions as they got pampered and adored by a fellowship of loving individuals at Cornerstone Church.  The hair, make-up, and the fitting of dresses and tuxes completed, it was on to Walnut Creek Presbyterian Church where limousines pulled up to provide rides around the block. Cheering occurred as the guests were introduced and walked down the red carpet wearing their king and queen crowns. Poses for photos and dancing filled the gym while a short walk across the courtyard echoed the sounds of the room that held a karaoke festivity. Each guest was partnered up with a buddy as some parents enjoyed downtime in the respite room or, for families needing less stimulation, there was a sensory room that offered a comfortable, quiet environment. 

There wasn’t a face in the building that wasn’t lit up. It was a moment centered on catering to all people of all abilities. What a great night and what immense memories were created by a simple action of treating everyone like royalty. The night was filled with smiles!

It gives me hope for this world filled with so many unknowns—a world where our children are going to be given the great responsibility to become communities that are built on a foundation of kindness and love. The blueprint for the future was revealed in the Night to Shine prom, where the world’s priorities were reconstructed, one light at a time.

Stefanie Boggs-Johnson is the mother of a pediatric stroke survivor and is the owner of For Every Season, providing in-home beauty services for the special needs and elderly communities.  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 her Facebook page @ForEverySeasonBeauty.

Connecting

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Parents of special needs children have a lot on their plate. Every day is filled with choosing what tasks are priority and what tasks can wait until tomorrow. Then there is the turmoil of what if the right choice isn’t being made and in fulfilling that choice, are we doing enough to complete what is necessary for our child to function successfully? 

Then there are the “nos” we must present to others along with ourselves; so much that one must sacrifice to meet the daily demands of the special needs world. Then there are the daily demands we must present through the correct channels to ensure our special needs loved one is given every opportunity possible. Daily living and advocacy are a juggling act for any parent. The “not knowing where to start” thoughts can immobilize one to the point of not evening bothering to start. It is a subconscious detriment of an “all or nothing” attitude. Sometimes, if we just remember to start with small steps, just showing up will start the ball rolling faster then we imagined. 

Call me an overthinker, but the above is more common than one might realize. I decided on the second Tuesday of January to stop thinking and just “do.” As a parent who is part of the Mt Diablo School District and being only a five-minute drive from the district office, I had no excuse for not attending the monthly meetings sooner. I am a typical human being who habitually goes through the motions to climb the problem mountains (don’t I already have a pile of stuff to do?) instead of flowing in the solution with ease. This time, the solution was to attend a meeting of educators and parents working together. It is, appropriately titled, Community Advisory Committee (CAC) and I realized how my “why bother going” was only a distorted perception that it was going to be a meeting filled with legal jargon that would have me yawning. Far from it. 

The meeting on January 8th was an educational experience that included a presentation called “Be Your Own Advocate” that educated the parents attending about the benefits of IEP (Individualized Education Programs) meetings. The CAC meeting gave me a better understanding on how to approach the IEP documents and discussions. The meeting also helped me realize that I am not the only special needs parent filled with emotions of being overwhelmed with information, let alone the emotions that come with having to read the details of all the challenges children like mine must overcome.   

I was filled with gratitude as I listened to the reviews of representatives from the Board of Education, Budget Advisory, and Parent Advisory, to name a few. I felt a sense of relief to hear about all the actions in process for the special education area and the amount of resources available to special needs families as we were given information about educational and supportive workshops and events. The parents in attendance were given the opportunity to share concerns and comments.

After the meeting, it was reassuring to be warmly approached by the MDUSD educators and employees. The meeting was particularly beneficial in that it opened the door to my involvement in school policies that affect my child. 

If you are a special needs parent and have not yet taken the first step in a legislative direction because you don’t know where to begin, begin locally. Start small. Attend one meeting within your school district to see what it is that keeps the engine running and maybe you will find out that you can add solutions for the parts that seem to slow it down. In the meantime, you will connect with others who are dealing with similar situations and learn the value of a “village.”  Don’t just show up for your child but show up for yourself.  Connecting to a support system is much easier than you think. 

For more information about CAC, visit www.mdusd.org or contact your local school district to inquire about informational resources for your area.  

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 that promote special needs awareness and compassion.  For more information, please visit inClusionClubHouse.org or her Facebook page @ItTakesASpecialVillage.

Special Needs Inclusion: It Takes A Village

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Below is an article written by my seventeen year old son, Stefan. Part of my goal to educate and promote inclusion also includes acknowledging all the loved ones of a special needs individual. Each family member comes to terms with a medical setback in their own unique way. Myson has always been very nurturing with his sister, Naomi, but I did notrealize the intensity of his concern for her. The protector rises within him and is equivalent to his love for her. When I asked him to write this article, I knew he had a writing gift but this really opened my eyes. It squeezed at my heart to see how deeply he feels about her. May this bless you and your family as much as it does mine.  We must always remember to include ourselves, whether we are the parents or another relative of someone with special needs, in the healing process. I hope that my son’s words spark more steps towards a world that is rid of misconceptions. May it lead to freedom for all our worries and fears as we remember that “it takes a village.”

~ Stefanie Boggs-Johnson

The Ink to My Pen

Do you know what it feels like? Have you ever sat anxiously thinking about all the demeaning and demoralizing insults little kids may exclaim at your younger sister because she isn’t “normal” like them? Are you constantly worried about your sister’s future and what opportunities she may be excluded from? Odds are, your answer to these uncomfortable questions is, most likely, “no.” However, for me, these vicious thoughts occur in my mind daily. Being the sibling of an energetic and humorous nine- year-old girl with mild cerebral palsy is the best thing to ever happen to me, but the inhumanity of those around her is what has me in a constant state of fear.

I know what Naomi Erica Johnson is capable of in this world. She is a very intelligent, imaginative, and loving child that wants nothing more than to have fun and live a normal life. Despite this, there are many disgusting people in this world that will try to tear her down and make her seem less than who she is: a beautiful girl who can do whatever she sets her mind to at any given moment. I am always wondering how her day is going and hoping that nobody is spewing rude comments her way simply because she was born with a disability. I am always making sure she is as healthy as can be so that her disability doesn’t hinder her at all. I am always persistent in assuring that she does her homework diligently and on time. I am always the overprotective brother that wants the best for his sister.

Although my anxiety and instinctive need to be her guardian causes me to constantly worry about her wellbeing, my little sister has also brought me an abundance of joy and peace. I love being able to admire her giant glowing grin whenever she sees me after along day or week. Going to the park, talking about how our day went, or simply being in her presence gives me an overwhelming feeling of exuberance. Not only has she made me happier and given me companionship like no other, she has also played a large role in molding me into the man that I am today.

Naomi has shown me what it truly means to be perseverant. She defies all expectations and limitations placed on her by educational systems, outsiders, and even the doctors that told our family she may never be able to do things a “normal” person can do. No matter how difficult a task may be due to her condition, she refuses to let it stop her. It is this relentlessness that motivates me every day to strive for greatness.

Naomi is not just my little sister, and I am not just her older brother. We are each other’s rock in a hard place; we give each other solidarity and confidence in life that nobody else can provide. She’s the jelly to my peanut butter, the wind to my sails, and the ink to my pen.    

Stefan Jones lives in Concord, California and is a senior in high school. In addition to working part-time, he is a volunteer for the Seniors Club at his school. Stefan is an honors student and hopes to attend UC Berkeley to major in Sports Management. He loves to hang out with his sister, his friends and enjoys going to concerts. Naomi Johnson is nine years old and is a pediatric stroke survivor. Diagnosed with mild cerebral palsy, she has overcome many obstacles and is a thriving, happy child. She loves to play outside with her brother, dance, color, and make slime.

Double-Edged Swords

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Being a parent is not easy—the role involves an array of stages, adjustments and emotions. Most parents would agree that being a new parent isn’t always something for which you are prepared. You think you are all set but that assumption is far from the truth. The intensity diminishes with more children, but it is a unique experience with each new child, nonetheless. Each new life is unique, with a new set of quirks and temperaments. The game of life changes accordingly.

One’s responsibility as a parent is high regardless a child’s ability that is born healthy, but it is even higher with a child with medical challenges. I am the parent of a son who has no medical issues and a daughter with special needs not obvious to the naked eye because she is on the high functioning end of the developmental scale. Diagnosed with cerebral palsy, she has overcome many obstacles. She doesn’t fit the stereotype of being in a wheelchair or having some obvious physical ailment. She is nine years old and aware of the differences between herself and her special day class.

Never setting limits or labels, her father and I always support and focus on treating her with love, without boundaries on her capabilities or participation in everyday childhood experiences. I cringe at the thought of her not being accepted or ostracized, or worse, of being bullied. Lord knows that can happen to any child, whether mainstream or not.

I recall the heart-wrenching time I had to gently inform my daughter why she is in the special day class at school. I matter-of-factly told her that she has special needs. That means she needs some extra help doing things that her classmates do, whereas they may just need different types of help, depending on the type of “boo-boo” that happened to their brains or bodies. I could see her eyes taking in our conversation as she asked, “So I am special needs?” in a surprised tone. Since she wasn’t in a wheelchair and didn’t needed help to eat, etc., I told her she may not need as much help and that’s why she is like the big sister to her classmates. The help she needs is because of the stroke she had in my tummy, and that’s okay.

I could sense her coming to terms with it as the surprise and confusion turned in circles in her head. My heart ached and my mind battled with my choice that day—the double-edged sword of preparing her mindset for this reality instead of hearing it via deeply hurtful remarks from children was difficult. Her being within the age group where the coping skills are learned and engraved in us, I wanted to be the one to teach her the foundation of self-acceptance and prepare her for the ostracizing that many children experience—that the possibility of unkind words people may say to her doesn’t mean that they are true words. I realized how much I need to trust my parental instinct.

We must help our kids to accept, love and trust themselves despite the limitations or labels others will try to place on them. As I continue this mission of teaching her self-love, I too must trust the reflection looking back at me. I am a parent that worries at each stage of my children’s lives, only to look back and see that God brought them through it just fine. The sacrifices that come with the blessings are oh-so-apparent as I tread this thing called life. I hope that the mountains both my children may face are climbed with tightened-up boot straps and a strength that comes from knowing that their existence is not a mistake. May they know that they have value no matter what pebbles or boulders come rolling towards them. My job isn’t to prevent the mountains from forming but to plant that seed of them growing into productive adults who know who they are at the core of their being. If their lives reflect this goal, then I have done my job and I can put down the sword—or better yet, pass it on to them.

Stefanie Boggs-Johnson is 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. She is also a licensed cosmetologist and the owner of For Every Season, a mobile beauty service for the special needs community. For more information, you may visit her business website ForEverySeasonServices.com or her Facebook page @ItTakesASpecialVillage.

Tests to Testimonies

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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.

Bounce Back

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It’s the experiences in life that truly identifies what is beneath the surface. Some of these experiences have made me stronger. Just when I think I am not capable to handle the next circumstance, I am somehow led through it to the other side. That’s when I discover capabilities that I never imagined I had. For the most part I have found that the harder I am thrown on my backside, the harder I bounce back up.

I am the mother of a pediatric stroke survivor. In 2009, she came into this world via emergency c-section and immediately endured multiple seizures and asphyxiations per hour. The doctors immediately placed her in the Neo-natal Intensive Care Unit (NICU) to save her life. When my daughter was born she was attached to more tubes and monitoring wires than I could count. A short time later, the doctors sat at the end of my hospital bed to advise my husband and I about the extent of her brain trauma. As they provided us with dire options, one of which was to take her off life support, we immediately told them “hell no.” The news had hit me like a brick and I felt my brain shatter like glass. I was officially in the numb stage of grief.

If you are reading this and you are new to the special needs world, your backside may still feel a bit bruised—okay, a lot bruised. Trust me when I say that it will get easier. It will get easier not because the diagnosis will miraculously disappear but because a new outlook will appear. The visions you had for the future have been taken away and grief is not limited to saying good-bye to a person. Grief can also include saying good-bye to the dreams you had before the crush of a setback. However, let me vouch for the fact that there always will be new options. You must give yourself permission to create new dreams that are based on personal growth and not the worldly standards.

If the news is regarding yourself or a loved one, it is now a race of a different method and track. There are new goals at the end of that daily finish line. For me, as I went through the ebbs and flows of grief, I was intensely steadfast to not give up on my child. I was not striving to deny what had happened but striving for her to simply survive. That was the first step up my mountain. I was just putting one foot in front of the other. However, don’t picture me as a woman who is all that courageous. Don’t assume I am a role model of toughness, because there are still times that I am quite the opposite. If there is already a comparison chart in your head, erase it right now. No one is without the frustrations and despair that periodically need to get flushed out with some tears (or a sturdy punching bag at the gym). The point is to allow oneself that moment and then immediately get back into the circle of solutions. Stay with the flock that will help you stay in the healing journey and not in the downtrodden clouds.

No one knows exactly what their future has in store. That sharp turn can be very bumpy as we have moments where we think we see the light at the end of a tunnel, only to allow fears consume us. Fears for someone we love very deeply can be even more intense. Each bump is a new chapter. Remember that perfection is the enemy and your story, or your loved one’s story, is not done being written. You have been introduced to a new world, a new community of people that will be a cushion for when you feel pushed beyond your limits. You will bounce back and face the new day with more wisdom than what you had yesterday. I promise.

Stefanie Boggs-Johnson is the author of I See You, Little Naomi and soon to be released I See You, Little Andrew, published by ALIVE Book Publishing. Her educational children’s books promote special needs awareness and compassion. She is also a licensed cosmetologist and the owner of For Every Season, a mobile beauty service for the special needs community. For more information, you may visit her website ForEverySeasonServices.com or her Facebook page @ItTakesASpecialVillage.

Special Needs Inclusion: It Takes a Village

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There is not a person on Earth who has not endured some type of challenge, and it’s no exception to have felt like an island, isolated from the rest of the world.  I, too, have felt this throughout my life and I share my world in an effort to ignite hope, affirming that you are never alone.  Like the title of this magazine, I reach out to those with common experiences in the hope of helping others feel “alive” again. 

My journey began when my daughter, Naomi, soon after her birth, was diagnosed with cerebral palsy due to an en utero stroke.  Although my thoughts on paper are geared for the special needs community, even those who have never been introduced to the special needs world can relate to the emotions of which I mention.  We all are spiritual beings having a human experience.  For those with special needs or if you have a loved one diagnosed with special needs, it is a world where adjustments you never envisioned having to learn (or re-learn) are now a part of your everyday reality. 

As a special needs parent, my goal is to reach others who may feel like the rest of the world just doesn’t understand the upstream battles of those dealing with limitations of a medical, intellectual, or physical nature. The vision began when I wrote “I See You, Little Naomi,” a children’s story about my daughter.  By creating this platform to educate, instill compassion and understanding, I was able to come to terms with each new phase of my daughter’s development.

When my family and I were first given the news of the extent of her brain trauma, my fears about my daughter’s future was overwhelming—almost too much to bear. As a means to alleviate some of that despair, I began a journey of bridging a gap through awareness and support.  It was (and is) about building meaningful relationships between the special needs and mainstream communities, because in many ways, it takes a village to thrive.

On July 21st, in Hollywood, California, I will have the privilege of being involved in a special needs prom event through the non-profit organization, InClusion ClubHouse. What began as a one-time attendance to an event, where all kids could enjoy a night of pampering and dancing, is now my permanent role on the board as facilitator to expand the organization’s mission to Northern California.  My daughter’s test has now become a testimony.  It is because of her strength and survival that I was taught true strength.  And that applies not just to me but to my entire family. 

For those who can relate to my experience as a parent, I want you to know that meaningful support is all around you.  It does not depend on you alone to provide a joyful, safe and productive life for your child or family member. And it takes more than living just to make it through the day to be “ALIVE”—it takes a village.

For more information about the Special Needs Prom, visit www.inclusionclubhouse.org or follow Stefanie’s Facebook page @ItTakesASpecialVillage

“I See You, Little Naomi” is available on Amazon.com

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