Melody Bogan

@melody-bogan | contributor
Melody Bogan lives with her darling husband, Carl, of 10 years and their incredible ‘trifecta’, 1 son and 2 daughters. Their oldest child, Carl “Allan” has a dual diagnosis of Down syndrome and autism. Life with Allan has shaped her wholly as a wife and mother, Christian minister, and professional patient advocate in living life on purpose with lasting purpose.
Melody Bogan

How My Son With a Disability Encouraged a Stranger in the Waiting Room

Arriving to work this morning, I took the time to turn my face towards the sky, the rain falling lightly on my face as I approached the entrance. There’s just something about walking in a light rain shower that transports me away from the stress and strain of this life. It calms me and usually leads to a reflective moment or two. Glancing at my phone, I got a notification that my Facebook memories were available to view, so I took a quick peek. The first memory took me back three years ago to the day I met H. The vivid colors and emotions of that encounter in a doctor’s office waiting room that day back in 2015 came back to me fully. I can see now through the lens of perspective and time that my life’s cares at that moment were more “ light rain shower,” but H’s were a full torrent of fresh pain, her life having been ripped apart 10 days before we met. If I may be so blunt, not only was there a deluge, but a massive landslide of sorts had crashed upon her, the rain had been so heavy for her. Recalling this memory of H, and me sitting across from her that day with my son, Allan, in his wheelchair… all I could do was tear up at the powerful moment we shared. She sat there across from the two of us, her eyes watery, but her smile prominent. It occurred to my heart to ask, h ave I ever been so incredibly wounded in this life, but still found the steel in my spine to defy that pain and smile anyway? That was H that day. Having a discerning spirit, I immediately locked in on her and noticed how she observed my son in his wheelchair, making happy babbles, not minding the rest of us nor worried about whether he was too loud or not. As is usual in my life of Down syndrome and autism, Allan, for no reason I can quite understand, began to smack his head (self-injurious behavior). I tried to calm him, but he continued to cry, so I did what I’ve done so many times before. I began to clap my hands rhythmically as a little song and hand clapping brings Allan back to a calm state. H’s smile got bigger and she turned to look at me and said softly, “You’ve got a beautiful boy there. Promise me you’ll enjoy him.”I shook my head to offer a light rebuttal with a chuckle, “Ma’am, he’s a handful as you can see. A sweet boy, but super ornery when he wants to be.” Her response floored me and those listening in the waiting room: “My boy was ornery, too. And I wish he were still here. Twenty-two years old and I lost him 10 days ago in an ATV accident. So when I say enjoy him, I know it’s hard… but please enjoy him.” She brought me nearly to my knees; the air went out of me. Without another word, the five other ladies in the waiting room, me, and the receptionist circled her, Kleenex and hugs being shared. Such a heartbreaking encounter, but remembering that moment even in this space/time three years later, I am still in awe that H found the strength to smile through a storm. How could she smile through the wind that must have knocked her over at the suddenness of his passing? How could she still be moving forward with the blinding rain of grief and loss? She shared before I was called back that her family and her church had been a rock for her, and as we made our way towards the exam room, I had to wheel Allan past her. Without prompting, my Allan boy touched H’s forearm. Something told me to stop, so I did. He then reached for her other arm and lifted them and began to clap them together. And for a moment, I stood still and let Allan do what he has been divinely gifted to do. Allan cannot speak, but Allan has taught me words do little, but actions speak volumes. I watched him and H clap hands, tears streaming down her face, her smile never dimming. She mouthed “ Thank you ” as we left and sitting here at my desk today, I wonder how she’s doing. Three years might as well be yesterday. Despite this life of disabilities, my encounter with H that day makes me that much more sensitive to the coworker I pass in the hallway whose countenance seems gray. It makes me more patient towards the person with an apparent attitude behind me in line. As I never know in spite of my own rain storm that surfaces with my son’s health scares from ER visits to prognosis that breaks my heart into pieces, when I’ll encounter someone who’s endured the catastrophic. My prayer for my heart is to choose grace and open myself to be the life raft for another soul overwhelmed by life’s storm. H may never know, but her example strengthened me that day, and I heeded her advice — I do enjoy my sweet boy. And I’m grateful that despite her having seemingly lost everything in her storm, she sheltered my heart from the steady light rain.

Melody Bogan

Teaching Future Genetic Counselors to Give a Down Syndrome Diagnosis

I recently attended a class with genetic counselors in training at a local college. Several families, including myself, were asked to be actors in adjoining patient rooms receiving a diagnosis of Down syndrome for our newborns. My nerves were shot and I couldn’t manufacture a tear for the acting. And then it occurred to me — I didn’t want the tears to come, because my experience at my son’s birth was handled so poorly. One tear would likely lead to a flood. When Allan was born, Carl and I got our diagnosis with an “Oh by the way…” — a callous afterthought in a smug tone. To add insult to injury, we were treated as if we were ignorant and incapable of comprehending the probable diagnosis. “Well, maybe you just didn’t understand what I said to you,” they said. What should have been an incredible moment — the birth of our first child — was a tumultuous jolt, with impromptu meetings with the Director of the NICU and half-hearted apologies from a student doctor and her attending. Their efforts to clean up their mess were met with a formidable challenger in me, the mother who just so happened to be a previous graduate student in the biological sciences with emphasis in reproduction. For years the scar has remained, the memory of having received such a poor welcome into the world of Down syndrome. My gorgeous baby boy was treated as a label, a novelty, with the news dumped on us of everything they believed he likely would not be. As you can imagine, I was rather anxious and admittedly cynical about what this student-in-training would say to me. But I’d made an agreement to be fully engaged, so tapping into my limited acting prowess, I went all-in as the student entered the room. She immediately disarmed me with what had to be the most sincere declaration of congratulations on my newborn and asked his name. For 10 minutes, I pushed back with emotional turmoil and peppered her with questions. It was obvious she had an idea of how this might go, but every time I went into a deep hole of despair, she went there with me and reeled me back out with reassurances and offers of resources both local and national. She gave the hard cold facts, things I obviously already knew, but hearing them in that moment still made my heart race. I asked her questions I knew she could not answer at her level of training. She struggled with them but said “I don’t know” appropriately and offered to research more to find an answer. Before these “mock counseling sessions,” the students were told they’d be giving a diagnosis of Down syndrome to actors. We were told not to reveal our true identities as actual parents of children with Down syndrome. The sessions were life-altering; the sincerity of this young woman’s words, and heartfelt congratulations on my beautiful baby, were reassuring and healing. I’ve waited nine years for this moment, and the tears won’t stop. We reconvened and the students shared their assessments; we gave feedback as actors. Then the veils were removed and the tears flowed. The healing and ministry in that space between parents, professors, advocates, and students was blissfully outstanding. I shared directly with the student who counseled me that she gave me what I had never received — and it was right on time. She got up from her seat to hug me, and whispered, “I’ll carry you in my mind with every patient I meet. I won’t forget what you’ve taught me today.” I also shared my faith and how it’s provided such comfort on this road of Down syndrome and now autism — Allan has a dual diagnosis. Several students approached me privately after the class to hug me tight and share how much that meant to them as fellow believers, that my family is sustained by our belief in the power and might of God in these challenging circumstances. My hat is off to the Down Syndrome Association in my regional area. I am better because of today, and healed. I am comforted that our future medical professionals are better equipped. My bad experience at Allan’s birth was necessary to educate today’s newest professionals. My pain, my hurt wasn’t wasted; it was ultimately used so we can learn how to do better. I give God the glory for another healing moment and the ministry that transpired with those future counselors. I left to see a rich blue sky, sun beaming brightly, but I was far more radiant and alive in that moment than the sun could ever be. Follow this journey on herStOREical THUMB.

Melody Bogan

Teaching Future Genetic Counselors to Give a Down Syndrome Diagnosis

I recently attended a class with genetic counselors in training at a local college. Several families, including myself, were asked to be actors in adjoining patient rooms receiving a diagnosis of Down syndrome for our newborns. My nerves were shot and I couldn’t manufacture a tear for the acting. And then it occurred to me — I didn’t want the tears to come, because my experience at my son’s birth was handled so poorly. One tear would likely lead to a flood. When Allan was born, Carl and I got our diagnosis with an “Oh by the way…” — a callous afterthought in a smug tone. To add insult to injury, we were treated as if we were ignorant and incapable of comprehending the probable diagnosis. “Well, maybe you just didn’t understand what I said to you,” they said. What should have been an incredible moment — the birth of our first child — was a tumultuous jolt, with impromptu meetings with the Director of the NICU and half-hearted apologies from a student doctor and her attending. Their efforts to clean up their mess were met with a formidable challenger in me, the mother who just so happened to be a previous graduate student in the biological sciences with emphasis in reproduction. For years the scar has remained, the memory of having received such a poor welcome into the world of Down syndrome. My gorgeous baby boy was treated as a label, a novelty, with the news dumped on us of everything they believed he likely would not be. As you can imagine, I was rather anxious and admittedly cynical about what this student-in-training would say to me. But I’d made an agreement to be fully engaged, so tapping into my limited acting prowess, I went all-in as the student entered the room. She immediately disarmed me with what had to be the most sincere declaration of congratulations on my newborn and asked his name. For 10 minutes, I pushed back with emotional turmoil and peppered her with questions. It was obvious she had an idea of how this might go, but every time I went into a deep hole of despair, she went there with me and reeled me back out with reassurances and offers of resources both local and national. She gave the hard cold facts, things I obviously already knew, but hearing them in that moment still made my heart race. I asked her questions I knew she could not answer at her level of training. She struggled with them but said “I don’t know” appropriately and offered to research more to find an answer. Before these “mock counseling sessions,” the students were told they’d be giving a diagnosis of Down syndrome to actors. We were told not to reveal our true identities as actual parents of children with Down syndrome. The sessions were life-altering; the sincerity of this young woman’s words, and heartfelt congratulations on my beautiful baby, were reassuring and healing. I’ve waited nine years for this moment, and the tears won’t stop. We reconvened and the students shared their assessments; we gave feedback as actors. Then the veils were removed and the tears flowed. The healing and ministry in that space between parents, professors, advocates, and students was blissfully outstanding. I shared directly with the student who counseled me that she gave me what I had never received — and it was right on time. She got up from her seat to hug me, and whispered, “I’ll carry you in my mind with every patient I meet. I won’t forget what you’ve taught me today.” I also shared my faith and how it’s provided such comfort on this road of Down syndrome and now autism — Allan has a dual diagnosis. Several students approached me privately after the class to hug me tight and share how much that meant to them as fellow believers, that my family is sustained by our belief in the power and might of God in these challenging circumstances. My hat is off to the Down Syndrome Association in my regional area. I am better because of today, and healed. I am comforted that our future medical professionals are better equipped. My bad experience at Allan’s birth was necessary to educate today’s newest professionals. My pain, my hurt wasn’t wasted; it was ultimately used so we can learn how to do better. I give God the glory for another healing moment and the ministry that transpired with those future counselors. I left to see a rich blue sky, sun beaming brightly, but I was far more radiant and alive in that moment than the sun could ever be. Follow this journey on herStOREical THUMB.

Melody Bogan

Teaching Future Genetic Counselors to Give a Down Syndrome Diagnosis

I recently attended a class with genetic counselors in training at a local college. Several families, including myself, were asked to be actors in adjoining patient rooms receiving a diagnosis of Down syndrome for our newborns. My nerves were shot and I couldn’t manufacture a tear for the acting. And then it occurred to me — I didn’t want the tears to come, because my experience at my son’s birth was handled so poorly. One tear would likely lead to a flood. When Allan was born, Carl and I got our diagnosis with an “Oh by the way…” — a callous afterthought in a smug tone. To add insult to injury, we were treated as if we were ignorant and incapable of comprehending the probable diagnosis. “Well, maybe you just didn’t understand what I said to you,” they said. What should have been an incredible moment — the birth of our first child — was a tumultuous jolt, with impromptu meetings with the Director of the NICU and half-hearted apologies from a student doctor and her attending. Their efforts to clean up their mess were met with a formidable challenger in me, the mother who just so happened to be a previous graduate student in the biological sciences with emphasis in reproduction. For years the scar has remained, the memory of having received such a poor welcome into the world of Down syndrome. My gorgeous baby boy was treated as a label, a novelty, with the news dumped on us of everything they believed he likely would not be. As you can imagine, I was rather anxious and admittedly cynical about what this student-in-training would say to me. But I’d made an agreement to be fully engaged, so tapping into my limited acting prowess, I went all-in as the student entered the room. She immediately disarmed me with what had to be the most sincere declaration of congratulations on my newborn and asked his name. For 10 minutes, I pushed back with emotional turmoil and peppered her with questions. It was obvious she had an idea of how this might go, but every time I went into a deep hole of despair, she went there with me and reeled me back out with reassurances and offers of resources both local and national. She gave the hard cold facts, things I obviously already knew, but hearing them in that moment still made my heart race. I asked her questions I knew she could not answer at her level of training. She struggled with them but said “I don’t know” appropriately and offered to research more to find an answer. Before these “mock counseling sessions,” the students were told they’d be giving a diagnosis of Down syndrome to actors. We were told not to reveal our true identities as actual parents of children with Down syndrome. The sessions were life-altering; the sincerity of this young woman’s words, and heartfelt congratulations on my beautiful baby, were reassuring and healing. I’ve waited nine years for this moment, and the tears won’t stop. We reconvened and the students shared their assessments; we gave feedback as actors. Then the veils were removed and the tears flowed. The healing and ministry in that space between parents, professors, advocates, and students was blissfully outstanding. I shared directly with the student who counseled me that she gave me what I had never received — and it was right on time. She got up from her seat to hug me, and whispered, “I’ll carry you in my mind with every patient I meet. I won’t forget what you’ve taught me today.” I also shared my faith and how it’s provided such comfort on this road of Down syndrome and now autism — Allan has a dual diagnosis. Several students approached me privately after the class to hug me tight and share how much that meant to them as fellow believers, that my family is sustained by our belief in the power and might of God in these challenging circumstances. My hat is off to the Down Syndrome Association in my regional area. I am better because of today, and healed. I am comforted that our future medical professionals are better equipped. My bad experience at Allan’s birth was necessary to educate today’s newest professionals. My pain, my hurt wasn’t wasted; it was ultimately used so we can learn how to do better. I give God the glory for another healing moment and the ministry that transpired with those future counselors. I left to see a rich blue sky, sun beaming brightly, but I was far more radiant and alive in that moment than the sun could ever be. Follow this journey on herStOREical THUMB.

Melody Bogan

Teaching Future Genetic Counselors to Give a Down Syndrome Diagnosis

I recently attended a class with genetic counselors in training at a local college. Several families, including myself, were asked to be actors in adjoining patient rooms receiving a diagnosis of Down syndrome for our newborns. My nerves were shot and I couldn’t manufacture a tear for the acting. And then it occurred to me — I didn’t want the tears to come, because my experience at my son’s birth was handled so poorly. One tear would likely lead to a flood. When Allan was born, Carl and I got our diagnosis with an “Oh by the way…” — a callous afterthought in a smug tone. To add insult to injury, we were treated as if we were ignorant and incapable of comprehending the probable diagnosis. “Well, maybe you just didn’t understand what I said to you,” they said. What should have been an incredible moment — the birth of our first child — was a tumultuous jolt, with impromptu meetings with the Director of the NICU and half-hearted apologies from a student doctor and her attending. Their efforts to clean up their mess were met with a formidable challenger in me, the mother who just so happened to be a previous graduate student in the biological sciences with emphasis in reproduction. For years the scar has remained, the memory of having received such a poor welcome into the world of Down syndrome. My gorgeous baby boy was treated as a label, a novelty, with the news dumped on us of everything they believed he likely would not be. As you can imagine, I was rather anxious and admittedly cynical about what this student-in-training would say to me. But I’d made an agreement to be fully engaged, so tapping into my limited acting prowess, I went all-in as the student entered the room. She immediately disarmed me with what had to be the most sincere declaration of congratulations on my newborn and asked his name. For 10 minutes, I pushed back with emotional turmoil and peppered her with questions. It was obvious she had an idea of how this might go, but every time I went into a deep hole of despair, she went there with me and reeled me back out with reassurances and offers of resources both local and national. She gave the hard cold facts, things I obviously already knew, but hearing them in that moment still made my heart race. I asked her questions I knew she could not answer at her level of training. She struggled with them but said “I don’t know” appropriately and offered to research more to find an answer. Before these “mock counseling sessions,” the students were told they’d be giving a diagnosis of Down syndrome to actors. We were told not to reveal our true identities as actual parents of children with Down syndrome. The sessions were life-altering; the sincerity of this young woman’s words, and heartfelt congratulations on my beautiful baby, were reassuring and healing. I’ve waited nine years for this moment, and the tears won’t stop. We reconvened and the students shared their assessments; we gave feedback as actors. Then the veils were removed and the tears flowed. The healing and ministry in that space between parents, professors, advocates, and students was blissfully outstanding. I shared directly with the student who counseled me that she gave me what I had never received — and it was right on time. She got up from her seat to hug me, and whispered, “I’ll carry you in my mind with every patient I meet. I won’t forget what you’ve taught me today.” I also shared my faith and how it’s provided such comfort on this road of Down syndrome and now autism — Allan has a dual diagnosis. Several students approached me privately after the class to hug me tight and share how much that meant to them as fellow believers, that my family is sustained by our belief in the power and might of God in these challenging circumstances. My hat is off to the Down Syndrome Association in my regional area. I am better because of today, and healed. I am comforted that our future medical professionals are better equipped. My bad experience at Allan’s birth was necessary to educate today’s newest professionals. My pain, my hurt wasn’t wasted; it was ultimately used so we can learn how to do better. I give God the glory for another healing moment and the ministry that transpired with those future counselors. I left to see a rich blue sky, sun beaming brightly, but I was far more radiant and alive in that moment than the sun could ever be. Follow this journey on herStOREical THUMB.