Hurt and broken
I could not see.
No more taking
only giving.
I’m now the king
loved and adored.
Patient, obscured.
Like a driftwood
Now found ashore.
I’ve left behind
bad parts of me.
Rising above
so found and free.
At a stalemate
I fought myself
at rock bottom.
Now, at the top
we always say,
“Don’t you worry,
yeah we got ’em”.
Experience
built, never bought.
lessons they’ve taught.
From good to bad
and bad to good.
On second thought
although I should,
a favorite
experience
I have not got.
Learn from them all,
That’s what I’s taught.

There were times in my life,
When I really felt like my existence was unimportant, like I was just back ground music while being stuck inside of my own head as I went about my day, in a world where everything was so overwhelming, I screamed inside of the TV, they saw me but laughed & hit the mute button. It was as though nothing was real or even existed, much less mattered.

My life was one giant TV & I was looking straight at my life like a spiraling, emotional roller coaster some might also have watched as a late night soap opera but none of it was real, much less valid.

I was just there unattached as I stand there watching my life & family pass me by at a young age.
I suppose I overlooked a lot of things I don’t even remember.

My dad would curse God & break things.
My mother was indeed a narcissist so these reactions would fire her up & I was the one who took care of her during her darkest hours of addiction.

I was there but was framed a lot from my father. I was called words like “freak” or “retarded” I learned at a young age not to cry out as victim everytime these darkest hours would return to me again.
I was told to silence my feelings unless I had something worth saying so I quit speaking & shut myself down.

There is a lifetime of Hell beneath the surface, so much blood & lava I spilled along the way after I left that place.

I look back at my ashes that I bled now & I saw a mirror & myself & everything that was ever behind me looking right back at me.
I had no choice but to turn around, to travel & face it all over again.
The same trail of blood I just wanted to leave behind, I had no choice but to go back to that place of anguish just to find myself all over again.

I cross paths again of times when I experienced fires so wild,
The smoke was so strong & I had no choice but to leave that past version of myself behind.

As the smoke began to clear I see this little girl crying on the porch steps of a home that is burning, it’s literally on fire but she’s still sitting on the steps, I have so many questions but wonder why she is just sitting there on the porch steps of a home that is falling down into flames behind her.

I watched as the ashes pepper down, surrounding us both I took hold of that little girl & I held onto her as though it was all a strong storm.

I finally held her face in my hands & I saw her tears run down from her blue eyes as we locked eyes.

She could speak again because she finally felt safe within her world of chaos.

She told me that I needed to go back into that burning house & find her mother who is very sick & that it’s up to me to save her.

I go inside to find that her dad is gone & this woman is sitting on the sofa watching the latest soap opera of my life, crosses built with fire & agony covers the walls & I ask her if she is afraid of dying as she lights up another cigarette.

She stares at the TV with judgment in her eyes & she tells me that I can do better.

Everything blows up into flames & it sends me back into a completely different timeline & I was not aware that I even exist in, this is my life now?

I didn’t believe in God up until now… I finally feel alive.

I have created my own path to meet eye to eye with God & what that all even means.

Growing up, I was always a sinner, I was born within a world of sin so without salvation through Jesus Christ I would only burn in hell.

It brought me so many questions & pain as a little kid I would look at the cross on my bedroom wall & pray to God at night that I was good enough & would someday make it into heaven.

Some days I just wanted to die so I could go to heaven & be in a better place.

I detached myself from organised religion all together after going through many dark phases beginning at a young age, younger versions of myself rebuked the thought of God or what it even means to be moving all of these piles of destroyed items aside from what I was raised to believe & finding my own path through spirituality. 🖤🔥

A college graduation ceremony,
The celebration of
Hours and hours spent studying,
Working student janitor jobs,
Barely sleeping or maintaining a social life,
Driven by passion and encouraged by professors and peers.
This a defining moment I haven’t experienced,
My college journey cut short by
A doctor’s visit,
A new orange prescription bottle that felt like a cinderblock in my backpack.
A series of events that I was sure would make everyone see me as
A failure, lazy, without determination.

I moved back into my parents home,
Like a puppy without a treat,
My tail tucked between my legs.
I struggled to find my purpose,
My place in a town I thought I’d left behind.

As fate, or the internet, would have it,
I met someone.
They saw parts of me that I was ashamed of,
And told me how bright they shined.
They laid bare past relationships full of betrayal and heartbreak,
And I held them when they finally gave themselves the space to cry for how they were hurt.
We slow danced in the kitchen,
To old school jazz,
While sweet potatoes cooked in the oven..
And I saw days stretching ahead
With this beautiful being
This other half of my soul.

Wedding bells pealed,
Vows were written and tearfully exchanged.
Families drew together to celebrate,
Dancing ruled the night!
But not for me.
I sat at another wedding reception, thinking of the text message
Telling me things weren’t going to work out.
Another moment I once thought would be so defining,
Slipping away from my grasp.

The more I grow,
The more I discover myself,
The more I lean into even the darkest parts of my mind and heart,
The more I think that my “most defining days” may be made up of simple, quiet moments.
Of the times I have held myself on the bathroom floor,
And through all the loss remind myself
I am worthy of love
And great things are still ahead for me.

To my supervisor:

I wonder how much we remember about each other before formally meeting. Predicting what happens next is less difficult. Working with you at the underfunded rural nursing home every Sunday made sure of that. I can count the times on one hand when I walked onto the floors overflowing with wheelchairs and the malodor of overcooked eggs, and it was not a staff member’s first day. I loved meeting new people, so I never minded.

You knew my hours as an activity assistant were long, but also that I couldn’t just leave when my shifts properly ended. At first, the motivation was to finish up tasks, like charting attendance, wiping up spilled juice, or finding missing puzzle pieces. As time went on, I found myself staying on my own accord. When commuting home, I would give myself a headache thinking of all things I wished I would have done or said. I never knew if or when I would see the residents again. Many were old and received treatments in the adjacent hospital. When one left, it tended to be for good.

Staying late let me provide companionship to the residents, who welcomed me into their family. In the literal sense, they all were family. The nursing home was in a town with more general stores than stoplights. You would know better than anyone. You were once babysat by that husband-wife couple who always threatened to break off their marriage through the paper-thin walls separating their rooms. Other residents worked at the hotel together. Still, some were retired professors, who no doubt passed down notes to my instructors who taught me at the college nearby.

Knowing about the interconnectivity among residents made me want to stay even longer. An aspiring healthcare provider then, it was devastating to witness residents interact with each other one week and then ignore each other the next. Dementia stole their abilities to recognize and remember. There was only so much “Good Old Days” magazine reading I could do to help them know who I was until my efforts became futile too. But it felt impossible to just stop caring. Sunday could never come fast enough. My weeks were preoccupied not with my chemistry homework but with thinking about what our favorite fiery, retired pharmacist would want for her manicure or if the sunroom was spacious enough for all residents to enjoy a magic show.

On occasion, the break room was my retreat. Located off the busiest wing, it provided little reprieve from resident squabbling, therapy dogs barking, and nursing demands. What is did give me was a place to collect myself after noticing a cart with a basket of bananas, water, and a note scrawled with “Processing the death of a loved one” parked in front of an octogenarian’s room. As my shifts went on, I noticed you and other staff members slipping in silently to do the same. The sadness and stressors of it all made us quickly turn from strangers to friends.

You and I grew to share a special bond. Each morning, I would find you shuffling through shelves and writing down learning objectives. Planning and executing the perfect activity were paramount, even if we were the only ones who noticed. I soon understood the sense of purpose and satisfaction your job gave you after you tearfully explained the hard times that you experienced in your financially unstable, misguided younger days. “I just want to own a house for me and my kids,” you said. I would agree as my eyes swelled with tears.

I grew up in a privileged family. My parents’ house large is enough for me and my five siblings to each have our own bedrooms twice over. I attended that well-funded college miles down the road. Working at the nursing home showed me how malleable my life was. When working, I was someone who cared about people who barely knew me and worked alongside people like you whose life experiences were so far removed from mine. But, nowhere else would I have been able to gain the depth of perspectives on the things that really mattered.

I cannot remember my last day working. I always thought I would be back after my spring break, but the COVID-19 pandemic had other plans. However, I do remember the day of my interview, when I toured the community space to the chorus of fifty feet thumping out “When the ants go marching home.” You, even before you became my supervisor, looked up as I entered and grinned widely, never missing a beat.

Now, I stay awake at night thinking of all the stories that not meeting you and everyone at nursing home earlier would ensure would never be told.

In hopes we meet again soon,
Jaya

To whom it may concern,

I was on day three of my binge. By binge, I mean combining: weed, Jack Daniel’s, chocolate bars infused with mushrooms, and sleeping pills. It was an odd combination, but it did the trick. After nine years of drugs and alcohol everyday, my tolerance was higher than I could ever be. In those days I chased that high, that happiness. Everyday I added new ways to make me feel better. If someone approached me with a harder drug, like meth or coke, I’m positive I would’ve done it without question.

I was just fired from a job I loved, being a high functioning addict and alcoholic wasn’t something they signed up for. I was morning a loss when I got fired, which helped fuel the three day binge.

I was living with roommates. I slept in the garage when it was nice. During the binge I stayed in the house because it was winter. I liked the garage at the time, it was my own space. I wasn’t judged for how much I smoked or drank. I got in my roommates way a lot. My problems got in the way a lot.

Day three was New Years Eve. I started early that day, and by night I was drunk and high. Then I ate more of those shroom bars until I was disconnected from reality. But for the first time in nine years, instead of a wave of relief, euphoria, and happiness – I was engulfed with fear, dread, and paranoia. Everything felt wrong. It felt like something bad was about to happen. I was terrified. I thought I was going to die. I ran to the living room panicking, shaking, and screaming, “something is wrong! something is wrong!” But no one was there. My roommates weren’t home. I was alone.

Next thing I knew I was on the ground shaking and convulsing uncontrollably. I felt fear and death weighing me down. I kept my eyes wide open because I was scared of the darkness when I closed them. I didn’t wanna get lost in the dark.

I heard a thousand voices in my head, scary and screaming like demons. I wanted it to stop, begged in my head for them to stop. Only in my head because I couldn’t talk aloud. I couldn’t utter a word. I stayed on the floor internally begging for it all to stop. It kept going. I saw dark shadow figures dancing around me. It made me feel even more sick and scared.

They eventually disappeared and I was still on the floor. I didn’t know what was real and what was a hallucination. The voices were still swirling around me. I felt stuck in this nightmare for eternity, I thought it was never going to end. Then, like a crack of sunlight on a dark and cloudy day, a familiar voice screamed, “STOP. GET UP!” The convulsions stopped.

The command drowned out the demon voices. It shouted again, “GET UP!” I obeyed. I got to my feet and felt for the wall. The room was spinning while I felt my way to the kitchen. I remember drinking some water. I remember throwing up in the sink.

I don’t remember how I got to the couch.

The next thing I do remember was waking up, feeling a wave of relief that I was alive and the dread was gone. The feeling of death holding me down was gone. I felt sick to my stomach but relieved.

In that moment, I thought about everything going on in my life. My personal losses, my friends, the job I lost (didn’t seem too important anymore), my family, the things I’ve done but didn’t want to talk about, I thought about everything. I ultimately decided I never want to feel that kind of fear again. The drugs and alcohol are going to kill me. I decided I didn’t want to die. I decided I didn’t want to live like that anymore.

The days that followed were rough, paranoia laid on me like a weighted blanket. I still felt a demon on me. I moved out of the house and had a mental breakdown because of other traumas and withdraws. I felt low, but I eventually got better.

I think back on the voice that told me to get up. I’m not sure if it was God, a guardian angel, or a version of me I lost years ago; because, the voice sounded like a better version of me. Instead of chasing a high, I started chasing that voice. I wanted to be that person. I wanted to be strong.

A year sober now, I can say I am a lot stronger. Fear can be a motivator. It was the kickstart I needed, but the strength I heard in that voice is what kept me going. The voice that told me to get up.

This is my life, the only person in this world that can really help me is myself.

Listen to that little voice inside your head that warns you, before it’s too late and it’s no longer a whisper but a scream telling you to get up.

It warns, guides, and protects you for a reason. That voice loves you.

To the Unsealed,

Since I was young my family had always moved a lot,
Close or far, just forward, forward, forward,
Always somewhere to go; never somewhere to be,

When I think of childhood, I think of spending summers with friends outside in the grassy fields of Germany,
Exploring cities and admiring buildings older my country, just enjoying the sun for the time it was out,
For the longest time I projected images of the world in my head onto others,
As if I had to force things through the filter of my eyes for them to make sense,
Many experiences brought me into sentience in a way I’ve seen others take for granted,
And I question if I trust myself to say “I know”.

The most recent time my family moved I didn’t follow. For a variety of reasons I decided it was best that I stay, so I planted my feet in Maryland.

As an adult I occasionally reconnect with acquaintances from high school,
I remember listening to their conversations and feeling envious of the way they talk,
The way they are with each other,
All so familiar- to what I had in Germany,

Envy begat curiosity, so I asked how their friendships started. They replied almost confused that I’d even ask that, stating that they’ve “always known each other.” Their parents are friends.
Their home is a family home.

My amorphous feelings took shape in the articulation of my thoughts,
I was able to connect and recognize how little i knew about my own experiences.
I wish I had lifelong friends,
I wish I had a family house,
I wish I had generations of collective experience to fill the spiritual void in my being,
I wish I could’ve known someone my whole life.

I saw it. I understood it. I couldn’t empathize,
All I could do was laugh at the dramatic irony, the things people will take away from life when they don’t share their thoughts with others.

They thought the most interesting about me was that I’ve not spent my life in one place. They expressed their anxieties about living up to their family’s expectations, and being responsible for maintaining the family house well enough to pass it on. They felt suffocated by the looming presence of their families, always fearing that they would “become” their parents.

What I found funny was being told that they kept inviting me to hangout with them because they enjoy the process of getting to know people, and think it’s sometimes more fun than just speaking to someone you already know.

Moving to where I currently am has made my life better because it’s made me more me. Another chapter in the book of my life. I can’t always empathize with other people’s experiences, nor can they with mine, but the ability to share our differing experiences makes you grateful for everything word in your story. Connecting with other people makes life better. Bittersweet and honest.

Nothing quite like it huh..
The darkest before the..?

The City suffocation
met with a hand
asking to dance..

In the yellow jeep—
On the lake house dock—
At the formals and those ‘parties’
In the backyard with the bonfires—
On the top of our lungs.
At the NYC extravaganzas and all those weekend shows

The City of suffocation
met with a hand
asking to dance..

In the Uber—
On the Amtrak—
At the 100s of airports and all those adventures
In the sunshine of JAX—
On the island of Aruba—
At every
‘hey how’ve ya been?!’
but the moreso
‘see ya soon!’

The City suffocation
met with a hand
asking to dance..

In the kitchen—
On the sidewalks of Back Bay—
At the apartment—
that we
once called
Ours.

The City suffocation
met with a hand
that let—
…
…
…go.

In the bedroom.
On the 6th.
At the end—
of my—
world.

Paralyzed.
Numb.
The City suffocation..

A pride check—
A truck ride—
A bridge.
The all ‘too familiars’
welcomed home with a
darkness.

Yet a renewal
out of something..
Broken—
A ‘failure-of-being’
met with a
comeback story.

The ocean—
Mom’s check-in hugs—
Your ‘small town’ self—
Family Sunday dinners—
Where it all began.

Give it a chance..
what’s really left to lose?

Familiar saviors
with the warmth of
our younger selves and
all our innocent soccer days—
met with strangers and a sense of
out of place-gratefulness.

A phoenix in a sense
and of the sorts
of it.
5+ years later.
Look at this fire—
remember this fire
of simple—
yet pure—
and the most genuine—
magic.

The darkest.
Darkness.
Light it all on fire.
Jetty jumps.
Ocean dives.
The unplanned comeback story.

The City suffocation
met with a hand..
this time—of her own—
telling her to
…
…
…dance.

—xoxo
A

A NOTE:

Personally, I prefer to believe
that every experience
carries the possibility
of creating or catalyzing
change in our lives, positively.

Even lessons
can be blessings,
if we let them—you see?

But I digress—
because the prompt for this poem
didn’t ask me about my life philosophy—it asked: what are some experiences
that have impacted your life positively?

It was difficult, but I narrowed it down to three…

ONE:
The day my daughter was born,
I began to know love truly.
That’s not to say that I was ever
unloved—but at eighteen, the love of
my parents sometimes seemed as if
it came with conditions.

But real love never comes
with conditions—and I was
beginning to understand
what unconditional love
truly meant.

When her Hazel eyes met mine, for
the first time, I knew, I felt it:
I am alive, and I am loved,
and I am loving,
and I am love.

She made me realize
that no matter what happens in life—
love is always enough.

TWO:
The day my son was born,
I began learning how to love myself.
I’d come face to face with my
then-perceived failures and flaws—
and began to forgive me—
the day my son was born.

His bright son-light brought
to me an awareness of
my own beauty—both inside
and out. He brought new meaning
to my life—reminded me of
the joy found in the journey
—and love.

Through his eyes, I had a Chance
to see myself as I truly am:
sacred, divine, and beyond
deserving of the love I give
to everyone else.

He helped me change
how I see myself.

THREE:
The day I married my husband,
it felt like the first day of the rest of my life.
After all the angst and hurt
and heartbreak of adolescence
and my early adulthood—I told myself,
I’d never want to be a wife. I thought
it’d be preferable to protect my heart
with walls of steel—but he saw me
though my pretend-hardness,
showed me a love that is true and real.

Love—as romanticized in film—
should feel always like sunshine
and rainbows, no? But that’s not
the way it always goes…

Real love gives you
a reason to remember
who you truly are—even when
you feel so far from yourself.

True love is like holding up
a mirror. We must
make peace with the hurt person
inside of ourselves—we heal,
so we don’t hurt each other.

We adventure on journeys
through the self,
alongside one another.

And when we align
our hopes and desires
with the power of our love—
truly majestic experiences transpire.

EPILOGUE:
I suppose I could sum all this up
by saying that the best thing
that’s ever happened for me is love—
but I don’t believe that simple description
is truly distinctive enough.

My daughter taught me to love others
and to let love in; my son taught me
to love myself and find my joy again;
my husband taught me to trust, and to see
that every ideal interaction starts with inner peace.

Dear Unsealers
Have you ever wondered if God was purposeful? I found out literally just right now and in fact it impacted me so much that I decided to write my letter on this NEW news. Let me build the stage. I was in a relationship for 12 years , we were married for 5 of them. It was a terrible season of my life going through the divorce. I was left with so much anger. The betrayals and schemes left me completely heart broken. It was bad and I had NO hope for a brighter future other then writing my thoughts down.. BUT God. BUT God friends! He stepped in when I accidentally ran across a pastor out of Houston online. He had me pursuing a relationship with God in no time. It’s been a beautiful mess. But let me get to the point of what happened. I was struggling with forgiving my ex. I was getting ready when I head the pastor speak on forgivness. I decided to pray to have God bless my ex. This was two days ago.. my son just told me tonight that after two months of ALOT obstacles his dad closed on a rental property tonight. I smiled and told my son. ” That’s great, I’m happy for him and I hope he is successful.” I felt a stronghold break as I said the words. I truly meant it. And it felt good to mean it. My heart feels lighter. Friends, if you are struggling with forgivness currently, I pray my story has you wanting to forgive. I want the best for you and to be truly free on your journey.

With much love and happy to say Houston brought me a pastor that has allowed me to let go of my problems.
Jasmine Murphy

Trust is the prelude of gust
Fast and strong a result,
Of experiences that crushed,
Words you cussed for being hushed.

Among the rust avoiding to be corrupt,
Discussed myself trying to readjust,
Occult is the trust tucked behind the cult.

It wants to interrupt playing in the front,
While being in disgust selling you mistrust.
And what’s there to trust, when it instruct you insults?

What’s just is to be found after the hunt,
Once the gust of trust dust your guilt,
There’s nothing to be fear,
see the balance tilt to what is near,
it’ll make your problems disappear,
all you feel that’s real and dear,
Trust itself will find you peace.

Not all changes in your life will seem like a good thing until you gain some clarity. Some life changes will alter you in unexpected ways where you feel that you will never recover and that its life shattering revelations seem to define you in unexpected ways. You can’t see the future into the unknowns where you confidently know the events unraveling would actually change your life for the better. At the time you feel like you will never recover. Your so deep into trying to process the unfolding series of revelations you can’t see how these moments and challenges are setting you up for success! The challenges with accepting or embracing the changing moments coming at you can seem life shattering! They simply don’t seem as a necessary purging of old habits or crutches you counted on in order to make you feel comfortable in your circumstances. You should grieve the loss of what could have been. You should I process and embrace the waves or tsunamis of feelings that catch you fully by surprise!

For me, the day I found out I was pregnant with my daughter at the age of 21 was one of those moments where life changed me for the better! I had this preconceived theory that I would I never be a mom. In fact, I had already aligned myself into believing that being a mom, for me would be toxic for any child. I didn’t have a healthy role model in my own mother that made me want to be a mom. Some events that happen to us are seared into our brains where after many years, you still remember exactly where you were, what you were wearing, and weird details that you just cannot shake off! February 2nd, 2002, I was having a heated argument with a family member who was eating in front of me and I felt a wave of nausea that hit me in a way I had never experienced before. I was also late. I was in denial that the first test was accurate and after buying so many pregnancy tests to confirm that I was indeed pregnant, I still didn’t tell anyone. Those two lines on each test confines my worst fear, I was pregnant! I had been on the pill and we actively used condoms. I knew the father wouldn’t be a good partner or father, but I felt stuck. I felt so stuck to abide by the status quo of our families that I shut down and the flood of events that would follow for the next few months hit me like waves crashing into the jetty and I was the rocks trying to brace for impact. I just went through the motions. When I really started to tell people what was happening they all seemed to know I had been carrying a baby and yet said nothing. Later, I would discover that they knew because I was puking all of the time and looked different. I felt different but did not realize anyone else could see that about me. At the time, I thought I had truly kept my secret hidden. Now, that seems laughable to me. It’s funny how time and distance changes your perspectives. At the time I simply couldn’t see past my uncertainties and insecurities of becoming a mom. The following events from the discovery of my pregnancy to feeling forced to marry a man who spent our wedding to get drunk and party rather than start a new chapter as man and wife, I was so utterly enmeshed into denial that things wouldn’t work. The intertwining of emotions were so confusing to me. Rather than continue to be the kind of mom who made the world revolve around me, I decide to go on a different path. Instead of wallowing in my insecurities at the impending lifelong responsibilites, I focused on breaking generational curses within my family’s construct to being the best mom a little girl never asked for. I felt this increasing anxiety that my daughter would hate me and would discover I was a mother fraud. That she would instantly know I was never meant to be a mom. Fortunately, that didn’t happen. Instead, we grew up together. I learned how to be a mom and she was the best teacher I have ever had the honor of learning from. The day my beautiful daughter was born I instantly fell in love with this tiny human who I haven’t been able to stop staring at for the last 21 years of my life. I remember staring at her nonstop for the first few weeks. That was when being in awe of her began. Her being 21 has been a full circle moment where I see that I was absolutely over time was meant to be her mom. I still stare at this beautiful young woman who is still teaching me how to be a better mom all the time! She is the best of me. She is the best of herself. Though my marriage to her father ended that only made our bond as mother and daughter even stronger. She is most marvelous thing I have ever had the honor to create with the exception of her brother Who is also amazing! I am honored that she chose me to nurture her from a baby to an adult. I am so honored that I was chosen to be her mom!

We have the opportunity to face challenges and events that change us into something that can majorly transform our lives for the better if only at times we get out of our own way. Although becoming pregnant when I was just a baby adult that time in my life seemed overwhelmingly daunting at the time! Time, distance, and perspective have led me to embrace that I wouldn’t change the events that brought me to being a part of her life! Having my daughter is the best time thing with the exception of her baby brother that completely changed my life for the better! I am an absolutely better person for becoming a mom to these two loves of my life!

Dear Unsealers,
I remember that day like it was only yesterday. A gut-punch so powerful that I felt the life leave my body. Pain so unbearable that I thought my heart would break into a thousand pieces. It was the day a doctor told me that my son had an incurable rare disease that would rob him of his eyesight. And possibly his life.

It was a beautiful spring day in May of 2010. My son was only 4 year’s old. Birds were singing their beautiful uplifting melodies. Flowers were blooming with vibrant breathtaking colors of the rainbow. And I, a first time mom, knew then that I would never look at the world the same ever again.

The doctor did not sugar coat the news. Instead she delivered the devastation with such aloofness that it rolled over my body like a steamroller. “Your son has a rare syndrome called Bardet-Biedl Syndrome (BBS). He will most likely be blind by the time he is a teenager. He may need a kidney transplant due to life threatening kidney failure. He will never be able to have children of his own. There is no cure.”

After hearing the word “blind”, I shut completely down, as if I had heard a cancer diagnosis. I heard not another word. I was in a dark tunnel and could not escape, my husband holding me up like a concrete wall.

We went home and grieved. Grieved the loss of the future we had hoped for our son. Grieved the loss of him ever attending college and having a career. Grieving the loss of him ever having a wife and family of his own to love him. Grieving the loss of the possibility of grandchildren.

At that time, there were no Facebook pages for rare syndromes. There were no family support groups to turn to. We were all alone in this desert trying to help our son with a rare disease that affects only about 1 in 150,000 people.

We were lost in every sense of the word.

In the beginning, we only told a few close family and friends about the diagnosis. We needed time and space to digest and decipher the news ourselves. After all, the hopes and dreams we had for our son were now shattered like a mirror into a million pieces.

But the day came that we realized that our hopes and dreams were just that, ours. Not my son’s. The dream of him becoming a doctor or dentist or college football player like his dad were all in our master plan. Not his.

It was then that we realized that God had another plan, to use our son, and us through him, to reach out to the world about rare diseases and autism. To help bring awareness and acceptance to those who do not have a voice.

I started with a blog and Facebook page called “Hanging 11 with David,” to share our journey with Bardet- Biedl Syndrome and autism. I started writing stories about the good, the bad, and the ugly of day to day life with a child with special needs. I started speaking with civic groups, law enforcement officers, politicians in Washington DC, medical meetings and conferences. Basically to anyone who would listen to our story. I started moderating a telephone support group to be a sounding board for parents of children with BBS. That telephone support group now reaches all continents.

And then the grief lessened. Each day, a little by little, we saw sunlight beaming into that dark tunnel we had found ourselves in.
Somedays I hardly recognize the people we are today. Our son is thriving. He is truly a happy and loving soul. Sure, he still has bad days. Days where we all just want to crawl underneath the covers and scream, “Why him? Why us? But those days are few and far between now.

I often say that God knew that my son needed us and that is why He sent him to our family. But God also knew that we needed my son just as much. He has taught us to slow down and cherish the smallest things in life, like the simplest of milestones.

He has shown us our true friends and family. He has shown us what is truly important in life, and the things that are not.
No, it is not the life that we had imagined and dreamed of. But in many ways, this life of ours is even better than we could have imagined.

Yes, we took the road less traveled, as it was the only road presented to our family. But we never looked back. We will never see the world the same again. And we are all the better for it….

The Way to Grow

By Breanna Asada

About a year ago, on March 12th, I was at my best friend’s 21st birthday party. And my biggest worry was a job I interviewed for. “It’s been a few weeks and still no call,” I told one of my friends.

By the next month over; my best friend and I were going to have a night out. She ended up bailing on me for work. I was mad at the time; I didn’t text her back. I wonder now if I had back then, maybe I would have known what could have happened to her. The week or so after that; I ended the friendship with the girl I was at odds with. I’ve never done that before, but then again I’ve never felt freer. A month and a half later, I got the job.

Three weeks later in July is when I realized that I hadn’t heard from my best friend and couldn’t get a hold of her. None of my friends could either; not even when I asked the girl I was at odds with. I started posting video’s trying to see if anyone could find my best friend.

August second was the day I got my license and my Grandpa caught a bad cough. I was scared that he had finally got Covid. One week later I had gotten my license and he was diagnosed with cancer. And on August 15th was when my friend and I realized that my best friend had ghosted us.

September. Grandpa had started treatment. It took a toll on his body. He used to love cooking, but once Kemo started; that’s when we started to get takeout. October 14th is when my Dad and I got into a screaming match. I can’t tell you why; I don’t remember. What I do remember is the long drive I took afterwards. It still sounds so Grown-up of me. Riding to the next city over then down the strip.

October 18th, I was going to visit my Grandpa; at this point, he had been asleep for a few days straight now. This was my last chance to see him. I was in my car driving out of my neighborhood with a small vase I had made for him… I couldn’t do it.

I turned my car around and stayed home. I asked my Dad; who was already heading there, to take the vase with him… He forgot.

That night, around two a.m. I awoke to a shiver that covered my body and a loud ringing in my ear. That’s when I knew he was dead. That morning on October 19th, I stayed in bed as long as I could knowing that as soon as I stepped foot out my door, I would see my Dad’s face covered in tears, and he would tell me to sit and talk for a bit. I couldn’t wait any longer; I had to pee. So, I open my door and…

No one was home. I knew then too but my mind wanted to deny it. Even when both of my parents came home.

I had one last therapy session before my insurance was up. I felt guilty as to what I told my therapist; I told her of how I felt so relieved now that he was gone. How the stress and worry disappeared. She told me that people reacted to death differently and that it is normal to feel how I felt.

November. Sometimes, when I was alone; I would feel the need to hold something tightly to my chest. Even when I did; it didn’t help. I think that was the last time I left a voicemail for my ex best friend; at some point, in that month; I was angry and let her voicemail have it.

January. I was told that my Grandpa’s dying wish was for us to take my Brother to Disney World. I wasn’t really excited about this trip. But I kept wondering why he wanted us there; it had to be more than just Disney World. I am not a fan of a change in scenery. I soon realized that I was scared of the change.

That trip made me realized that growing wasn’t the cause of my Grandpa death. It wasn’t me getting a job or my license that started this chain reaction of events. My Grandpa would have still died this year even if my friend group didn’t end. That’s when I realized that I always stopped myself from growing; thinking I could outrun time but in reality; this is the way to grow. Rather time or myself; the clock is always ticking.

Before I realized it, a year had passed.

A year since the party.

March 12th.

Happy Birthday.

2 months before walking down the aisle

2 years after saying “yes I will marry you”

12 years after saying “yes, I’ll be your girlfriend”

I said “We can’t get married”

I loved you more than I loved myself
I thought that you loved me that way too
I grieved hard the next year believing you didn’t love me
I realized you loved me the way you knew how.
You loved how I treated you, how I made you feel, how I helped you grow.
I thought that was love.

2 weeks spent packing up the apartment we lived in together

2 hours spent moving boxes with my best friend and dad

2 eyes I had never seen before while you watched as I left.

I reflected and admitted that I didn’t know who I was;
tried new things and spent time with new friends,
started up old things and spent time with old friends.
I spent time by myself, with my old self and new, learning who I was.

3 weeks after moving out you crossed a set boundary

3 times I had to practice staying strong and upholding it

3 months you didn’t pay rent on lease you chose to keep and refuse to take my name off

I grieved, I cried.
I felt stupid and ashamed
I felt taken advantage of and small
You didn’t get what you wanted. I didn’t give in.

4 months into 29 years of life

4 months into a new relationship

12 months after saying “we can’t get married”

I love myself more than anything else
I am loved the way I deserve to be loved
I’ve grieved that I have accepted less. I’ve learned that all of me is loveable.
I’ve grieved that I learned that it was okay to accept less.

2 times a month I see a therapist; I’m learning to trust myself

2 months from now I will have lived on my own in a new city for a year.

12 years from now I don’t know where I’ll be but I will forever be grateful for the things I learned along the way.

I said “we can’t get married” and I changed my world.

We first saw her picture in a book,
In the days before everything was online.
She was a face among many
On one of a hundred plus pages in a kid’s catalog.
Not a book for kids to enjoy,
Filled with enticing toys and games.
But a catalog of kids,
Children that needed a home,
And we casually leafed through it like a store’s advertisement.
I don’t recall why we stopped on her picture,
But we did and made plans to meet her.
We felt the stares when we arrived at her foster home.
We were the minority in her neighborhood.
Her foster home was busy
With children running throughout,
Seemingly too many for the house to contain without bursting.
We planned to take her away for the day,
And she willingly joined a family of strangers
For her first trip to the grand museum on the city’s lakeshore.
I doubt she appreciated many of the exhibits,
But she loved the chicken nuggets after
As she fell asleep after her big outing.
We brought her back to her foster home,
And we agreed to discuss a second visit
To determine if she was a good fit for our family.
At the time, it seemed a practical plan.
Looking back, knowing what we know now,
It seems ludicrous that there was ever any doubt.
We said our good-byes and headed out,
But the noise made us look back.
We saw her inside the house,
Pounding on the door and crying.
She was almost two
And didn’t yet speak,
But she sure could scream.
And scream she did,
At us … for us … to take her with us.
There was nothing we could do
Except continue home
And call the DCFS office.
The next visit was quickly planned.
It would be our last.
We would bring her with us
To her new forever home.
The next time she left was when
She went off to college,
A vulnerable teen.
No longer the child without hair
Who walked with a limp and didn’t speak,
But still vulnerable.
She would return to us as a strong adult,
A beautiful dancer and learned scholar.
But most importantly to us,
She returned home as our daughter
Whom we love dearly.

Dear Daisy,

I anticipate your stems sprouting from the ground every spring, and I can feel you again. When summer approaches, your petals will showcase their beauty in the sunlight. I will close my eyes and take a deep breath, and for a moment, you are here in my arms. I imagine your bright blue eyes mirroring mine. Your smile is the brightest star in the sky. Your laugh roars, filling the earth with glee as you play with the other neighbor kids in nature. It is easy to get lost in the daydream.

Before you, I was giving my body away to men who didn’t deserve it. Drowning underneath insecurities and self-loathing, allowing myself to be treated as a piece of property that could be used and abused by men. Convincing myself that I wasn’t worth love, I kept telling myself that this was how I wanted to feel: worthless and nothing.

My period did not come. I kept telling myself, no, it isn’t possible. I was in denial. Adults have a superpower of lying to themselves, so incredibly powerful that they believe it until they can no longer outrun it. The truth will always rear its head, and it’s heartbreaking.

That morning in June, I awoke with intense cramps. I convinced my twenty-six-year-old self that my period was coming… three months late. Treating it as a typical day, I went to work. As I was Chatting with my coworkers, one of them being your father, about planning a fun night out, I felt a cramp, and a gush of blood erupted flowing outside of me. I ran to the third stall in the bathroom, and I saw it. I could no longer deny what was happening. I was losing you, Daisy.

Turning back into a childhood state of mind, I called my mother, and she rushed me to the hospital. Blood was seeping me through like a waterfall. When they came to tell me I was losing you, my heart tore in such a way that I am still unable to put into direct words. I hadn’t even developed the courage to tell your father you were coming; now I would have to say to him you were gone just as quickly as I accepted you were alive.

He was kind enough, but wasn’t the emotional support I needed then. He didn’t understand why I changed and didn’t want to be a “coworker with benefits anymore.” He got upset with me when I wouldn’t fulfill his desires, even though the doctors told me it wasn’t safe for me to do until I stopped bleeding. I did not want to be an object of his desire anymore.

I bled from June to August. Part of me didn’t want to stop bleeding because that would mean you were truly gone. I wanted even those parts of you to stay. The day the blood stopped, I put my hand on my empty womb and wept. It was two days past my twenty-seventh birthday.

I had spent most of my life avoiding any feelings of vulnerability. Losing you was the first time I felt every emotion in my body: sadness, anger, regret, and eventually relief. The truth is, Daisy, I wasn’t ready for you, and I will never know if that could’ve changed in time for your arrival. Granting myself to succumb to my emotions took me from a shell, and I embraced the complete existence of myself as a person and a woman.

After hours of self-reflection, I realized I was not stuck with anyone. Cutting the ties, I focused on building myself as a strong and confident woman. I promised myself never to give my body away until I could say to myself, “I love you.” Somehow, I got there. I felt the wind hit my face, and you said, “You got this, Mommy.”

Experiencing a miscarriage has given me unwavering strength to tackle obstacles that dare come my way. I am intelligent, I am kind, I am important. I am grateful for every ounce of pain and emptiness I felt in my body. Never again will I throw my feelings into a drawer and pretend they aren’t there. I can articulate when I am hurting and ask for support from people around me. The experience made me a whole person, not the robot society deems the most acceptable. My strengths and weaknesses make me whole, just the way I am. And Daisy, that is the most freeing feeling anyone can be. Through you, I discovered how to love myself.

You are the world, Daisy. I never gave you a name. I planted the prettiest seed to remember you, and will continue to bloom for you and me.

I Love You Always,

Your Mom

Today at work, I surprised a fellow associate when I told him that I had been born with cerebral palsy, which had affected my left side since I was a child. He had a surprised look on his face since he could not detect that I had anything wrong, much less a disability. I am a fire safety officer with the security department ata New York City hospital, and my job requires that I be ready to rumble and jump into action at a moment’s notice. But had you seen me when I was 4 years old, you probably would not have thought that I would go that route. In those days, in the middle 60s, my mother had her hands full taking me to the hospital every 3 months to see the doctors at the prestigious Hospital for Joint Diseases on 124th Street in East Harlem. One of the first things we’d do is go over to see Jimmy the cop. Jimmy was a security officer in the hospital, and he always made me feel like a little giant whenever my mom brought me to see him. Then it was on to the doctors where we’d do the same exercises over and over again to see if I needed any special tools to button my shirt or tie my shoe.
As a result of my condition, I walked with a limp, and I also dragged my left foot behind me. When I was three and a half years old, I was fitted with a metal brace on my leg to alleviate this condition.The brace was attached to the ugliest looking Brown looking brown orthopedic shoe you ever laid eyes on. I was always pleading with my mom to let me wear sneakers like the other kids, but she would just console me that one day soon she’d buy me a pair. Along with this special challenge was the added pressure of being a small kid. But, as I was soon to learn, my challenges did not define the size of my heart and the scope of my mind. Starting in 1967, I was part of the national United Cerebral Palsy telethon held at the Ed Sullivan theater in New York City. I remember the special party events we would attend in those days before and after the late autumn telethon. The Christmas parties were a kid’s dream. Even though it was a lifetime ago, I can still remember my name being called, and walking with my mom down the center aisle to meet Ed Sullivan, who shook my little hand. But nothing could top the candy at these parties. Yep, candy was life for a 4-year-old kid. Everything was larger than life when seen through the eyes of a four-year-old. I still walk by and the glance through the windows of the glass door of the old Ed Sullivan theater on West 54th Street which years later became the setting for the David Letterman show in the early eighties. I remember meeting Edie Gorme and her recently deceased husband Steve Lawrence. Every year they supported the telethon and all the kids. Our moment was when they paraded us on the stage and one of the hostesses would sing her song every year.Look at us we’re walking, look at us we’re talking. I can still hear that voice in my head. But it was in 1968 when something happened that made me see things differently. That summer, my sister and cousin were entered into the Little Miss America Pageant at the Palisades Amusement Park, and my mom put me in a several weeks long sleepover camp for kids with CP. I remember arriving at the camp and seeing all these kids who had it much worse than I did. Many in wheelchairs, and some severely disabled. But they smiled and laughed, and did the best they could in the face of their challenges. The counselors were so friendly, and my first crush was a 20 something year old blonde who I thought had taken a special liking to me. Well, at least that’s what I tell myself nowadays. Then, one day it happened. We were at the pool when she shattered the illusion.She proceeded to unstrap her left leg and hop into the pool. My little four-year-old mind was mortified. But she could really get around in that pool though, I’ll tell you that.
As I became familiar with all the kids, I tried my best to help when I was able. Helping them in their chairs, or making life easy whenever I could.
One fine summer day, we were sitting in the group playing our kazoos. There we were, just drooling along to Peter Paul and Mary’s only number one hit song, “Leaving on a Jet Plane”,
when I spied one of the kids 50 ft away on an embankment, tossing rocks at a tree. I left the group, and limped over to where he was in his wheelchair. As I got closer, I could see that he was throwing stones at a hornets nest. I tried drawing attention to us as to what was going on, but it was too late. As I approached his wheelchair, he let loose with a stone, and struck the nest. Faster than you could say lickety split, we were surrounded by hornets who zeroed in on us, stinging to their hearts content. I struggled with his wheelchair trying to roll it down the grassy hill, but try as I might, I was no match for the grassy hill or the hornets. Help arrived, and we were hurriedly rescued by a couple of counselors and taken to the nurse to be patched up with calamine lotion. But the events of that day stood with me for the rest of my life, because it taught me that with great power comes great responsibility. Yeah, I know it sounds cheesy, but I have always tried to live up to that awareness.The next year, I had my leg operation, and the brace came off. I finally got those sneakers. They were skippy’s, but wore them proudly. All these years later, I became a hospital security officer where I continue to make a difference. I especially like to go up to the young kids that are wheelchair bound or get around with the aid of a walker and give them words of encouragement. I’m no Jimmy the cop, but if you need help escaping a hornets nest, I’m your man.

Battle-Tested
Fact: Trigeminal Neuralgia is a nerve condition that affects the face. The pain is so severe the person sinetinrs cannot eat or drink.(Cited from John Hopkins Medicine)

Why you always frowning?

That’s the question I get when I
am out in public spaces
The appearance of disdain
Does not match your assumption in form of a question
So let Me explain my position

I met TN in 2015
AKA Trigeminal Neuralgia but will preferred to be called the name that is well-known to us TN Warriors the Suicide Disease
She leaves an aura of a profound phenomenon so dreadful
As a result she reeks havoc in your life
Dims your light, kills your strength, and leads to a path of toxic thoughts that is so dark

I had a good face card
Always smiling that drew others to my light
Now these days the frown you see upon my face
You would assume this my natural resting state
But inside I am going through a turblent cycle of zaps
So stong as lightening bolts
Sending waves of painful shocks
That it makes you consider for a second
Is really worth living

Toxic thoughts takes center stage when the pain goes on and on
Your spirit wants give up in dispair
But your soul feeds you strength and willpower to fight your most darkest thoughts
Before experiencing this strange unique phonemional I was proud of my smile
But after being on this journey
I became proud of my strength

I didn’t choose this experience it chose Me
God saw that I was best fit for this war
I wear the crown that is heavy, however I have blossomed into this beautiful courageous warrior

So how is this experience profound?

I stand as a bold surrivor
Who has talked, walked, cried, released in constant sharps shooting pain that is never ending
While still living my life out loud and still complete the daily responsibilities that I am tasked with
I still show up with my soul smiling
I proudly say to TN: You still didn’t win.

For years my life was a contradiction.
Preaching the good book but living for addiction.
I sold my mind, my soul and myself short.
My sins building around me, an impenetrable fort.
An unholy war raging in my life every day.
If I met the Good Lord, what would I even say?
Nothing but silence, no matter how hard I tried to shout.
Water pouring in, no words getting out.
Trying to scream, my face painted with despair.
Holding my head above water, gasping for air.
Fighting to breathe, body consumed by pain.
Endlessly treading water in the middle of a hurricane.
Growing tired, my mind begged me not to stop.
But my body didn’t care, it had been through a lot.
Slowly slipping beneath a crashing wave.
Giving up all hope of being saved.
I swallowed the liquid, my lungs on fire.
My entire existence easing into desire.
The water encased me and pressed into my bones.
My world got darker. I was all alone.
I quit fighting and closed my eyes.
I had made my peace, I was ready to die.
But his hand reached for me, and pulled me back to the surface.
A voice cried out, you haven’t fulfilled your purpose.

A Letter to the Girl I Used to Be, to Say Goodbye

Dear Girl,

When I look back on who I used to be, there are so many feelings that come to the surface. While the girl you are now doesn’t hold a candle to the woman I am today, you were still a badass and deserve to be celebrated and recognized for all that you endured. You faced each day with a rigor and enthusiasm that has been somewhat subdued, but is still apparent in some of my actions. Let’s break down your life up until now, and look at both how far you have come, and how far you still have to go.

Everything you know, or think you know, is a byproduct of someone else’s experiences. Yes, you have had a few adventures, in Florida, Marine Corps boot camp, and working in the “real world.” But you have yet to be in the trenches, and have yet to develop the grit it takes to fully form into an adult. You are so free and have your entire life ahead of you, do all the things you can now before your marriage and your son (not necessarily in that order), tie you down. Do not get my wrong, having your son is the best thing that could have happened to you, but your strength will act, as per usual, as a double-edged sword. It will hold you up and allow you to persevere, but will cut you down at the same time.

You will pour everything you have into your family and first marriage, and get very little in return from your husband. He will incorrectly assume that you have everything handled, which you will, but you will need love and support that will not be forthcoming. Renee, you deserve better.

Right now you have surrounded yourself with a tribe of people who feel like your second family. Embrace them, love them, relish every moment and every experience you have with them. Go to every bonfire, stay up all night talking, and never ever take them for granted. While you will have close relationships and intimate friendships in the future, it will never be like it is now. Some of these people will be in your life forever, but the camaraderie and freedom you share with them cannot be recreated. You are lucky, count your blessings and love on them as much as possible.

The last thing I need to emphasize is to spend every chance you get with Dad. Answer the phone every time he calls, when he asks you to dinner, go happily, and tell him every chance you get that he is the best dad and means the world to you, and that you love him. The same goes with Mom. They will leave your life before you are ready and they made you.

Renee, you are beautiful, you are worthy of love, and your life turns out to be pretty great. You have a loving husband who is willing to work through the hard times, and three miraculous, hilarious, solid humans who you will be charged with guiding, teaching, and loving with all of your heart and soul. Let them, and their love, change you, do not fight it.

I have to say goodbye to you, because even though you are working on qualities now which will serve me well in the future, the person you are now doesn’t really exist any longer. At least not in the same way you did, back in the day. I also want to thank you for everything you have gotten right, but more importantly for all of the things you have gotten wrong. Those were important lessons and your pain becomes worth it in the long run, trust.

Take care of your heart Renee, it is one of your best qualities and people will break it every chance they get. What those people won’t get to see, is your ability to rebuild from the ashes of heartbreak, and the way you will love better, stronger, and more fiercely than before.

I’ll see you in my memories and sometimes my dreams. I offer you peace, kindness, love, strength and respect.

Yours truly,

Fully formed adult Renee