Today, I Cry

Today, I Cry

Things stir within me, things that I do not want to acknowledge and try to suppress. Those things are emotions. I am the mother of a special needs daughter and everyday for the past twelve years I have blamed myself for the medical trauma she endured. I have a hard time sharing from the deepest, darkest core of my being. I vary between the extreme of masking my pain and fear with morbid or goofy humor, to isolating in my home not returning phone calls, to ruminating on how no one seems to understand my life as a special needs mom. My daughter survived an enutero stroke before she was born and my grief, though not as raw, still lingers; a scar that is supposed to symbolize healing, yet I still feel the sting.

I knew I had to type this today because I feel like I am going to implode sometimes. My daughter is now 12 and I know I should be grateful that she is alive despite the excruciating option to take her off life support. I know I should be grateful that she met every milestone I would obsessively worry about at each stage of her life. She is at the tween stage now and new worries surface. It is like if I am not worrying, it means I am not caring. I do not know how to not worry for her. What kind of mother am I to look at her and only think about how I wish the stroke had never happened to her, that I did not do enough then and I am not doing enough now? My husband tells me I did nothing wrong; it was the powers that be. I did everything right when I was pregnant, he says. His voice is just a faint echo as I navigate through this mental fog. How could the “powers that be” allow something to happen to a life that did not even meet the world yet? My daughter is becoming aware of her struggles, especially with math and comprehensive reading skills. She has a heart of gold and does not yet know, or may never fully understand, the meaning of her diagnosis of mild cerebral palsy and that she is in a special needs class. In her eyes, she is just another girl that wants to make Tik Tok videos, wear mommy’s make up and perfume, be independent and do her own hair while balancing the fact that she needs extra help doing certain things. Her tween stage of struggling self-esteem is the underlying reason why she huffs n puffs when I try to help her. So, I put on a mommy smile and continue speaking positive affirmations to motivate her.

Today, I cry.

It isn’t because I am not proud to be her mom or don’t love her unconditionally; it is because I ache to rewind the time. I ache to have somehow known that the kick or twitch I felt as I carried her was the stroke and not just her trying to make room in the space that was her home for 8 ½ months. I am a special needs parent who prays she is not one day ostracized or rejected because she processes things differently. I pray that she will have that one best friend who will have her back no matter what. I pray she is not bullied. Yet in the same millisecond that I ponder over the “what if’s” that cause the future trips from hell, I filter through the insecurities that stem from my own childhood traumas that may be possibly overshadowing the next chapter God is writing for her. I am forever in debt to God listening to my prayers while she was in the NICU as the staff questioned if I was in denial. They did not state that directly to me, but I was told later by people whose names I can not mention. Am I in denial now? Am I in denial that this really happened to her and that one day she will catch up? Or am I in denial of accepting the beauty of who she is today? I am a mom of a child with mild cerebral palsy who had achieved and survived so much during her short time here on earth so far.

So why do I cry today? I cry because grief is not linear. Grief is not limited by time. Grief is repeated layers that stack up if I do not look at them directly. I will always grieve for the life I envisioned for my daughter before her brain trauma as I let her create her life. I will always have these moments that will sprout up like a weed. The weeds do not go away if I do not have a good cry occasionally. The weeds will fester and send me down a rabbit hole of despair and depression for what happened to my child. The weeds will have me snarling at any child or adult that I think is treating her through a stigma lens of ignorant stereotypes. Yet I can not force people to see the wonderful, kindhearted, humorous and beautiful woman that she will soon become. I must let go of my own self-demoralizing cave in which I tend to reside.         

Today, I cry.

She will never see my tears for her because if she does not see her diagnosis as a hindrance, I must come to terms with not trying to eliminate the stages of grief. I must stay on the road to gratitude along with these emotions. But in the meantime, in these moments that I pull out the weeds, I will let myself purge.

So today, I cry.  


The Divided States of America

As a mom of a biracial 19 year old son who is just starting his path into adulthood, my intense worry for him has me in freeze mode sometimes. As a white woman watching what is happening, I could not imagine the pain, anger and sadness the black culture must be feeling. To be judged by the skin color you were born with is beyond what I can comprehend. I can not imagine how tired a black person must be from it all. Any human who isn’t seeing the devil making this world his playground is in serious denial. I don’t write this to claim an individual’s experience with racial injustice. I write this because all humans must start having more compassion with action. People shouldn’t only care when it affects them directly. People should care that it is happening to others too. I am so so sorry to everyone in the black community. I will pray and ask God what He wants me to do to be part of the solution. Much love to everyone.

Below are poems my son wrote. I hope his poems make us realize how overwhelming these times can be for the next generation.

Stefan Jones

I wrote these two poems to release my frustrations about the racial injustice in this country.

I don’t care if they make you uncomfortable.

You, myself, and everyone else needs to continue to acknowledge the systemic flaws and be proactive about initiating change and progression.

copyright Stefan Jones
copyright Stefan Jones

Mirror Talk: Soul Ties

The sexual abuse you endured at the hands of sick individuals created the illusion that you are loving and loved only when it involves your body being desired by others. You need to release the people that have caused you pain. You need to release the obsessive, fixated thoughts based on the hope that you will be chased and forever wanted. You must release the feelings of rejection that subconsciously arise when someone goes from amorous attention to none at all. The people that flooded into the gate opening is your void from unfulfilled love you desperately think you need. The soul ties that are created as they leave is the rope that is tied to them. You use the rope to keep the lies you deem as truth from hitting you- that your worth is of no value when they exit. These are soul ties disguised as the truth of your worth and value. They are ties to your childhood wounds that is the opening, that void through which ill-intentions enter. This soul tie from physical exchanges ignites passion to provide what you never feel for yourself on a daily basis. This soul tie that made you feel wanted was yet again an ending where you feel abandoned, unwanted and unworthy. So you fantasize and obsess on the scenarios in which they say they want you, you are desirable and that you are all they ever wanted. I, God, am here to always whisper to you that it is a shadow blocking you from seeing the people that offer you a true love but in ways that your inner child is not accustomed. The abuse you endured taught you that physical passion is the only sign that you are attractive enough to others. The ache you carry is masked with short lived euphoria when gratification occurs in your world. You latch on to the attention they represent and the tie that starts from the center of your pain keeps them at the borders of your void. You try to pull them in to be the fulfillment that proves you matter. It is not the people that you tie but the voices that lie and tell you unhealthy advice to remedy your feelings of lack. You never lacked in the past and you do not lack in the present. You exist and you matter. You manifest what you tie yourself to- the mistreatment that you thought or currently think is a sign of being loved, wanted or cared for. The soul tie you must release are these false beliefs. It is these false belief systems that are the soul tie lies. Turn to Me as you go through this journey of enlightenment and new manifestations, to solidify your new caliber that allows in the people and things that unconditionally view you as valuable. Ask Me to continue this awakening within you every day, within your deep recesses and the core of your True Self—the Holy Spirit which is Me. I am here to remind you that you are enough. I will help you to stop the debilitating pattern. Release these ties that bind you.

#MirrorTalk #SoulTies


Inclusion Clubhouse

Source: Inclusion Clubhouse

It amazes me how love motivates one to do things that have such positive rippling effects. These ripples start at a center and form beautiful consequences that encircle all that was originally on the outside. It’s always a mission of the highest order when the cause, the center, was for the benefit of others. The rock of a mother’s love makes the deepest circle of ripples. Linda Baptista Hall is proof of this.

Founder of the non-profit organization, Inclusion Clubhouse and Djanai’s Angels, Linda Hall took the wheel while on a very emotional and bumpy road after her daughter Djanai’s medical diagnosis of Cerebral Palsy that was the result of Hypoplasia of the Corpus Callosum (the thinning of the line that lies between the hemispheres of the brain). After many years of vocalizing concerns about signs of Djanai having developmental delays since she was an infant, it wasn’t until age three that her daughter’s condition was finally diagnosed and she finally began receiving appropriate medical assistance.

Linda’s tenacity kept and still keeps the mission always to seek out what is best for her family. Seeing an opportunity in 2014 to provide her daughter the enjoyment of an event more easily accessible for the mainstream than those with limited abilities, she organized a celebration of Djanai’s birthday as a “Sweet 16” prom.  After this event where families of all abilities raved about the joy-filled celebration, Linda founded Inclusion Clubhouse and began the annual special needs prom to raise funds for the formation of a clubhouse where the special needs and mainstream community can connect on a year-round basis.  Along with this amazing feat, she also formed Djanai’s Angels to provide resources for the special needs community. Through her adaptable clothing boutiques, special needs fitness events and summer camps, she maintains a daily environment where anyone of any ability is welcome.

The village within her own home which includes her husband Pooch Hall (actor of Showtime’s “Ray Donovan”), her children Djanai, Djaeda, Djordan, and Djulian, expands outside of her Southern California doors into the hearts of so many other families that struggle to feel connected. Djanai’s siblings take a challenging adjustment and turn it into an insightful outlook to share with others as they navigate the struggles that come with caring for their oldest sister.

As 12-year-old Djaeda and eleven-year-old Djordan sweetly stated, one must see that everyone is different and to not judge a book by its cover when it comes to the treatment of others; underneath appearances there lies a very loving attribute.

The focus of Inclusion Clubhouse not only taught her children but also many other families to celebrate our differences across all boundaries. When the sixth annual “A Trip Around The World” special needs family prom takes place on Sept 22nd in Winnetka, California, deeply rooted connections will form for many families from all walks of life.

As Linda Hall aims to expand her mission to bring the special needs family prom to the East Bay, love will continue to reach the multitude of individuals around her and the world.

May the ripples be felt for generations to come.

For more information and to purchase tickets for the “A Trip Around The World” Special Needs Family Prom located in Southern California, please visit: http://inclusionclubhouse.org/

Stefanie Boggs-Johnson is the author of “I See You, Little Naomi” and “I See You, Little Andrew.” Her educational children’s books promote special needs awareness and compassion. She is also a licensed cosmetologist and owner of For Every Season, a mobile beauty service for the special needs community. For more information visit ForEverySeasonServices.com