Our Hidden Stories

Did you see that picture? That cute picture of my daughter with her brother? The one that you couldn't even tell my son wasn't neurotypical if you looked fast enough? So, yeah, that is fake because the reality is what was happening when I took that amazing photo. […] as a mom, I adore these smiles. Things you can't see by that photo are that my son wouldn't walk for himself at the playground that day. That he kept trying

The other day I read, “Remember how exhausting that newborn parenting phase was? Well, some special needs parents have been doing that for years. So let that sink in.” It is a meme that is supposed to inspire thought and compassion from those who don't know what it's like to have a child of severe need but have a child and therefore know the feeling of exhaustion. But, unfortunately, to me, it placed an elephant in the room. I want

Ever have a realization smack you in the face? In my case, I sat up straight, my eyes began to lose their focus, my heart began to pump a little faster, my stomach started to twist, and I felt distant but completely clear and present at the same time. “You got tired of me canceling, and I got tired of making excuses.” That was the line written by Tracey Higgins that did it. This moment of clarity as to why

“I would say he’s begun to do that in the last six months,” I said to the doctor in response to her developmental probe into my son. “Isn’t progress wonderful?” The question was innocent enough, and for once, I was able to digest it without frustration or sadness. “It really is,” I replied with a smile and actually meant it. The thing about progress, for me personally, is that my son had a regression of skills just after his second

There is a saying, “careful what you wish for because you just might get it.” This idea is that we should be more thoughtful of what we truly want because it might not be what we need. Innocent comments replay over and over in my head that I made as my son was a baby. Those comments feel ignorant now. Comments such as: I'm not in any hurry for him to sit up. I'm not in any hurry for him

“My son has Phelan-McDermid Syndrome,” (PMS) I declared as the nurse asked if my son had any pre-existing conditions. “What was that?” she asked as many have before her and many after her will as well. “It's a genetic deletion,” I began as I always do, “it might be easier just to write down 22q13.33 deletion syndrome,” has become my default as many in the medical field may understand chromosomes better. However, they still have no idea what those numbers

Recently I read a beautiful story. The story goes like this. Outside of the hospital, a man is watching as a mother helps her son into the car. The man repeatedly asks if this mother needs help with her 20 something-year-old, who’s larger than she. She kindly declines and even says this is normal, so no worries. In a surprise twist, the man becomes emotional because his baby now has a feeding tube, and he didn’t think he could handle

It wasn’t 7:00 am on a Saturday, and I was exhausted when I wrote this. My son woke up in the middle of the night, as he often does, and every time he fussed a bit, I woke, holding my breath and bouncing up in a panic. Each time he was fine. But the physical toll of that alone could exhaust a person. But it isn’t just that. I went in to grab him to start his day, as the

Every night, like clockwork these days, I hear the sounds of my son as he begins the cycle of waking up. It starts around midnight. Then on and off for hours, he wakes, then goes to sleep, then wakes. During these times, I feel the deepest of my sadness that my son doesn’t speak. Most people would assume that a 5-year-old should be able to call for their parent, ask for a drink of water, or say they had a

Little do we know when we are children how much of a luxury having time is. I remember saying how I couldn’t wait to be older and my grandmother telling me, “you will always be old, but you will only be young once,” something I wish I had appreciated at the moment more. She was trying to tell me that I would one day yearn for time, but mostly to enjoy the moments we have. So, when the reality struck

“I meant to tell you it’s not Global Delay anymore. It’s now a diagnosis of Intellectual Disability,” I said to the nurse as she was presenting her portion of the IEP (Individualized Education Plan) for my son. She quickly questioned, “who gave you that diagnosis?” To which I replied, “he just had some testing done through developmental at (the hospital), and he was given that when they reevaluated his autism diagnosis.” She looked at me through the zoom meeting asking,

Five years ago,  with only a few hours of labor, my son came into this world. He was bigger than his sister, quieter than his sister, and in that brief perfect moment that he entered this world, our family was complete. On his first birthday, we had a big party, just like we had done for his sister. I jokingly would say it was to celebrate us as parents making it a year because, after all, “these kids will never

I remember when we started early intervention. The thought behind it is that with a bit of intervention, my child would catch up to his peers. The reality is, at the time, I didn’t know that my view, and of the countless other experts, of the situation, was completely wrong. “Let’s get him the help he needs to catch up,” they would say. Of course, we wanted that! I mean, look at his sister so happy and healthy, in no

Community Submission by: Ameera Rey One minute you are laying in bed. Eyes closed. Trying to go to sleep. Then you have an out-of-body experience. You are in the hospital. A doctor has just walked in and told you the person you love so much is dead. You are sobbing. So extremely angry. Angry you couldn’t save him. Angry you couldn’t protect him. Angry his body was riddled with a disease that stole his life. You’re so angry that you

“He should have access to his voice at all times,” she wrote.  Out of context, it would be hard to know what to make of a statement like this, but I think most of us would be inclined to think it is correct, or good advice, or at least true as an aspiration. Unfortunately, in this case, it was more like a weapon. I should have expected it. After all, the internet seems to spawn a whole population of individuals

For a year and a half, I worked out in the room attached to our playroom. There is a sliding glass door that leads into a mostly glass room which looks out into the backyard. This also means anyone who is in the playroom can see me peddling away on the Peloton. Over the last year that everyone has been home, there are days my husband would say, “take a ride,” and if you need exercise as I do, many

When we first got married and were looking for our first house, I told my husband I only wanted to live in a downtown area. I love the ability to walk to the train station, go to shops, walk to dinner, basically enjoy where I live. For our first and second homes, this was the case. But, after getting our son’s diagnosis (insert link to diagnosis story), we realized that he might not just grow into our home. Life is

My son is like a puzzle. One with no directions, no picture, and guess what, it’s missing a piece – or in his case 3 pieces. Sure, we know where the missing pieces are, or should I say aren’t, but it impacts other puzzle elements as well. There are days I look at my son, and I wonder, does he know he has an itch? Do you ever have an itch and think about it? I do, now, at least.

“What did you do?” It is often asked in one form or another when people find out my son bites, kicks, and hurts, it most cases, me. See, people assume that I must have upset my son. After all, why would he hurt me? But the reality is, I am fortunate because I realized I was doing nothing wrong. Let me go into my exact thought process. At first, I thought it was my fault. That my son was trying

We left the house exactly as scheduled, which in itself was a miracle, arriving as requested 30 minutes prior for check-in at the hospital. Everything was going smoothly thanks to pre-check-in via the phone, and we were sitting in the radiology waiting room a full 10 minutes early. Our appointment was for 8:00 am, and I thought, man, we might be out of here by 9 o’clock. Before I get too deep into this story, let me tell you a

The first time I heard the term hypotonia, it didn’t even register. I focused on the shots and answered questions at that checkup when our pediatrician uttered a word I never heard before. I must have missed it. After all, humans do that. We use context clues, and if the word doesn’t seem too alarming or concerning, we tend to assume the meaning and move past it. My husband heard it, and he must have started to do research and

The world stood still for a moment as the freeways were silent, the skies empty of any planes, and the sidewalks were bare of any people. The uneasy calm mixed with fear in the air was a feeling I had known all too well. It was the feeling I had when we got our diagnosis. I was in a pure daze during that phone call. The world lost all sound, and it felt as if I was all alone, even

One night I was sitting on the floor near my son as he rolled around chewing on a book, and I realized the rest of my family was laughing and having fun at the kitchen table. It was the odd moment where my life sort of flashed by, and I realized I always was the one to step back to “do the right thing” so others could enjoy themselves. I was the one who left early to get a child

Community Submission by: Anonymous It’s 8:00 a.m. and I am awakened by the sound of J, my youngest son, kicking the wall next to his bed. I am so very tired. I feel like my actual soul is exhausted.  I unzip J from his special bed, which keeps him safe at night. His whole room smells like pee. I sniff his sheets. Despite the fact that I washed the bedding days ago, it all needs to be washed again. J, age

Community Submission by: EllieEllie is a lawyer living in Baltimore with her husband Mark. They are parents to six year old Molly and two year old Lila, who has Lamb-Shaffer Syndrome. To follow her story, sign up for Ellie’s newsletter. To the mother of the two year old, worrying about whether to have a second baby... I see you.  I see how worried you are, about having a second kid and what if that child isn’t healthy?  What if they

In this episode, my daughter Cierra and I unpack how a seemingly small experience brought some big emotions to the surface. Let's be honest, as women, a bad hair day can make or break your attitude. For black women, this brings up even further underlying challenges. Together we openly discuss fear of judgement, battling self hatred, and navigating the path to self acceptance. This episode also includes a special call to action for white bodied individuals operating in spaces of influence. We hope our transparency will be reminder of our power to heal through sharing our stories.

What kind of friend am I? I am always busier these days. I have children, so I can’t do anything for myself during “normal” hours. I’ve moved three time zones from one set of friends, two from the next, and I somehow need to make new friends where I live now in the middle of a pandemic. I don’t want to be a bad friend, but the deck is stacked pretty high. I am busy, stressed out, my life consists

Community Submission by: Leslie Mehta Leslie Mehta is an attorney. She lives with her husband, Tarun, and two daughters, Brooke and Blair, in Richmond, Virginia. You can follow her advocacy journey at www.prettybrooke.com, on Facebook at pRETTy Brooke, and her YouTube channel of the same name. I met Tarun Mehta in law school. Five years and several bar exams later, we married near my small North Carolina hometown on August 11, 2007. Rarely did we discuss having children. We were

Community Submission by: Kelda York Kelda York is married with three children and lives in NH. She is a pre-school teacher, an avid cook, and enjoys a good novel. My son has always kept us on our toes, even before he was born. There were concerns over a heart arrhythmia, which was detected at 16 weeks of gestation. He decided to join us 6 weeks early and spent weeks in the NICU to fix some lung development issues (his heart

I used to think that when people had children with severe disabilities, it would be something detected in the womb, or shortly after birth—that it would be obvious that something was wrong. But this was not at all the case with our son, Asa. Asa is the third of three boys. He was born after a mere two hours of labor, a big healthy baby weighing 10lbs exactly. I remember a hospital staff member saying, “Congratulations—you have a toddler!” For

I am not going to sugar coat it. No one in this world loves my son more than me. No one in this world gets hurt by my son more than me. He pulls my hair, sometimes clumps in his hand. He kicks me, punches, and throws his body with no care forcing me to strain my muscles to the limits while also covering me in bruises. But the thing he does that has caused me the most pain and

Community Submission by: Anonymous I recently watched the movie “Lady Bird.” If you haven’t seen it, it’s the story of the relationship between a rebellious teen and her mother.  I wouldn’t have normally resonated with this type of plot, but recently, my 11-year son and his hormones have been ruining my life (hormones + autism = horrible combination). So when the mother, played expertly by Laurie Metcalf, basically kicked her daughter out of the house, I was cheering from afar! 

Community Submission by: Avis Avis is the mother of three boys: the older two are typically-developed, and her youngest, Bennett, has Phelan-McDermid Syndrome with autism. She is also a wife and a dentist. On June 16th, 2020, my 6-year-old son Bennett ran out of the house and jumped the fence. By the time we realized he wasn’t hiding or avoiding us, we could NOT find him. We live on a corner and we weren’t sure which direction he ran. We

Being black often means walking through life and never being fully seen. Authenticity is a privilege, and in a world that sees you as a threat, the cost can be too steep. Our Hidden Stories warmly welcomes DaviAnn Fearon, all the way from Philadelphia, for another honest and open sharing of stories. Together she takes us through some of the childhood and college experiences that have heavily shaped her views on trust. We discuss keeping secrets, isolation, and wearing a “mask” as a means of protection. This episode ranges on topics from coping mechanisms to feeling hurt and betrayed by the Church. The conversation concludes with some thought-provoking questions on giving each other space to be fully seen.

When we got the diagnosis of Phelan-McDermid Syndrome for my son, we were shocked. Our hearts sank, the mourning period began, and we realized that every expectation we had for our son was gone. As if overnight, all I could see was a never-ending list of therapies, doctors’ appointments, paperwork, and realizing it would never end. It felt defeating as a horrible battle between my brain and my heart began. So overcome with grief, I could not see clearly at

In Part 2 of this honest and barefaced series, Octavia Scott returns as we embark on a journey revealing even more layers, focusing on the privilege of healthcare. We share thoughts and experiences as we uncover the fight for wellness and the importance of self advocating. Our talks encompass themes of motherhood, real talk, and rest; culminating on the importance of support from others and what we can do to help each other.

Sept 11th was the beginning of the end, but not for the reasons you would expect. The days that followed changed my life forever, and in many ways, I am still recovering. Walk with me through my own personal story of when joy and pain collide.

In Part 1 of this series, Octavia Scott and I, have a very open conversation centered around perceptions, navigating challenging choices, and the guilt we often feel for wanting more out of life. We also speak to the pressure and challenges faced by women of color who are perceived as “strong”, but more than anything are seeking a place of rest. Our time concludes with calling out the exhaustion and invalidation that comes when we allow "life leeches" to remain in our lives and drain our energy.  Oh the layers we uncovered!  10:00 The weight of mom guilt when tough choices have to be made 27:00 Denying your full self for the benefit of others 35:30 Even when you hear the story, it's based on your perceptions 38:30 Why sympathy isn't always the answer to showing support ....and so much more!

(Please note this episode addresses sensitive subject matter that may be activating to some). In this episode, my guest Shawn Futch, engages in a courageous conversation around her trauma experiences and what led her to knock down the “wall” she built to survive. We explore areas such as rejection, battling depression while parenting, and the power of choice. Our conversation wraps up with a unique and powerful take on what it means to reclaim what's been lost.

In this inaugural episode our guest shares a powerful story centered around overcoming adversity. He reveals the difficulties of being “misread”, his realities as a black man, and how his struggles influence the way he navigates life. Follow me on Instagram @our.hiddenstories https://www.instagram.com/our.hiddenstories/ and @charryse_j https://www.instagram.com/charryse_j

Check out this brief trailer to hear more on the vision of the podcast.