In a windowless private room, isolated from the chaos of the Emergency Entrance to Cincinnati Children’s Hospital, Alex and I shared a quiet moment. Alex lay exhausted on a portable hospital bed alongside a wall of rainbows and animated stickers. I sat by his side on a hard plastic, metal-framed, guest chair. Our arms entwined along the edge of his mattress and our hands clasped by his hip. Contemplating the day, we stared absently into our sterile room, which included gray supply cabinets, a small sink, and a hand-sanitizer dispenser that had become our frequent friend.
After a deep sigh, I turned towards Alex and praised him. “You did it, Bud! I know it was hard. I know it wasn’t easy.” I raised his hand in mine and squeezed for emphasis. “But, you DID it! You should be very proud of yourself!”
He was, I knew. Still, it’s always nice to hear it from others. Alex turned his head towards me and then smiled with tired accomplishment and appreciation. “Thanks, Dad.”
We held eye contact for a while before his head turned back, his smile faded, and his gaze drifted back towards the fluorescent lighting shining softly above us. He seemed lost in thought, but I knew what he was thinking. I had seen that look before.
It had been a hard trip for Alex, out of his bedroom and into the Cincinnati Children’s Hospital. Thankfully, the ambulance transport had been smooth and uneventful. Thankfully, the six-person Emergency triage team had expertly slid Alex from his gurney to the bed in which he now reclined. Thankfully, he had endured back x-rays without too much discomfort. Thankfully, Alex had resumed his social skills with everyone he met and now rested comfortably in our temporary room. Away from the chaotic sounds of the Emergency triage, we awaited further direction of our journey to assess Alex’s back pain and Duchenne’s evil progression.
It was a long wait.
We passed the time with random conversations of movies, TV shows, and friends. As only fatigue and boredom can derive, we animated the accents (Indian, Russian, British) and wisdom of Alex’s many doctors who we knew all too well and who we would surely visit during the week. We enjoyed a late-night visit from Kaitlyn and John who kindly brought us dinner (Penn Station and Chipotle!) and helped Alex feel at ease with his hospital stay.
But, with every lull in imagination, pause in conversation, or visitor exit from our room, you could see Alex’s thoughts drift back into the void. You could see his thoughts wander and feel his grip loosen from mine as he stared into the light above and contemplated his new reality.
When I looked up, it seemed I could see it, too.
After we had been transferred to our exotic, glass-walled room in the Transitional Care Center (TCC) on the 3rd floor of Building A, Alex again looked towards the ceiling. He was exhausted, but you could see his thoughts still brewing. This time, the questions pushed through. It was near 2AM.
“Dad, will my back ever get better?” he whispered with tired hoarseness from the long day and night. Normally a talkative kid, Alex didn’t say anything more. He didn’t need to. Fatigue ruled the moment and his tone, though the question rang loud and clear. I sighed in understanding, and equal fatigue, and then replied quietly.
“It will, Bud. It will. Just give it some time. The doctors will help us.” I answered him honestly, though admittedly sought to delay an expanded conversation. I knew what he was seeking. I knew what he wanted to hear. He wanted solutions. He wanted answers. He wanted to be pain-free again so he could enjoy life as he wants. As anyone wants. Was that too much to ask?
“But, what if it doesn’t?” He sleepily persisted. “What if my back will be like this forever?” You could feel despair creeping into his mind.
I did not respond immediately. His question was valid. Heck, I thought about it, too. What IF his back did not improve? What IF this is his life moving forward? What IF this was as good as it gets? I hesitated to reply as because I knew the length of discussion it would encourage. His questions required full attention. Alex’s closing eyelids told me the conversation could wait.
“Let’s get some sleep, Bud,” I told him. “Tomorrow will be here before we know it.” Alex nodded and then asked for a hug as he always does before bed. I did, kissed his forehead, and then lay down on the comfortable fold-out chair beside him. I knew we had a hard week ahead. I knew his difficult questions would return another time. As I contemplated how to respond, the rhythmic pulse of his Bi-PAP lulled us both to sleep.
You see, physical challenges are only half the battle with Duchenne. Sometimes, physical challenges lead your son to boundaries of despair where he questions his health, his present, and his future. Sometimes, the questions are triggered by acute pain or prolonged periods of discomfort. Sometimes, they appear out of nowhere. Sometimes, you can see them coming. When they do, your son questions his self-worth, value, or even life itself, no matter how positive he may seem. He asks will I EVER get better? is THIS my life? or any other such difficult questions that weave into conversation when you least expect them and linger longer than you would prefer. Sometimes, the questions are uncharacteristic of him and surprising, like do I have purpose? do I make a difference? do I have value? Sometimes, they are downright frightening, like should I even live?
When you hear such questions, you realize Duchenne in all its rawness. You see the disease beyond immobility and inability. You know it beyond isolation and loneliness. You feel it beyond pain and despair. When you hear such questions, you clearly understand our shared humanity and impact upon one another. You tell your son he DOES have purpose, he DOES make a difference, and his life IS important, just as much as anyone. You remind him how much you love him and how much he is loved by others, some he may never know. You tell him not to worry and that you are here for him…always. You are thankful, so very thankful, for others who express to him the same.
Like the very next morning in the TCC. Oh, how Alex needed this! Oh, how WE needed this!
Our morning started with frequent visits from nurses checking vital signs and administering medications to respiratory therapists adjusting pulmonary settings and mask fittings to doctors making rounds and listening to lungs breathe. The day continued with dutiful smiles and friendly encouragements. But, they all seemed so professional, so determined and businesslike. Such is life in a hospital.
Then, while enjoying a late breakfast of bagels and cream cheese, we were greeted by a knock on the door and a tangled parting of curtains that covered our glass door. To our pleasant surprise, in walked Courtney, a nurse from Neurology who Alex has known for years! Those who have followed this blog know how special she is to Alex and how she is one of Alex’s favorite people at Children’s Hospital.
“Hey, Buddy!” Courtney (aka Sara Silverman) exclaimed after comically untangling herself from the curtains. “How’re you doing?” She wore a huge, genuine, smile on her face as she approached his bedside.
Alex beamed with happiness for seeing a longtime friend. Holding a bagel piece still in my hand, I backed away from Alex’s mouth and allowed the two to reconnect. Her visit had come at the perfect time!
“I heard you were in the hospital so I wanted to stop by and see how you’re doing, Buddy!” Alex smiled wide for her thoughtfulness and kindness. Courtney then turned and pointed to the still-ruffling curtains. “And, look who I brought with me!” We followed her direction as the curtains tangled and parted again.
In walked Kenny-Benny flashing an equally large and energizing smile! Kenny-Benny is a longtime friend of Alex’s from the check-in registration desk at the Duchenne clinic, and he always puts a smile on Alex’s face. Today was no exception! Perhaps the biggest ever!
“How ya doing, my man?” Kenny-Benny asked as he, too, approached Alex’s bedside and then extended his trademark fist-bump alongside Courtney. And so began a 15-20 minute visit that fueled Alex for the upcoming week. Pain? What pain? Duchenne? What Duchenne? THESE interactions were just what the doctor ordered and, arguably, validated every ounce of effort to get to Children’s Hospital.
The welcome human interactions didn’t stop there.
Throughout the week, Alex befriended three shifts of nurses, practitioners, respiratory therapists, physical therapists, cafeteria food delivery personnel, and linen custodians. Throw in fellows, interns, and doctors from pulmonary, cardiology, endocrinology, neurology, psychology, psychiatry, physical therapy, rehabilitation, and palliative care, and our room seemed like a revolving door of visitors, friends, and soon-to-be-friends. Each and every one brought a smile to Alex’s face and joy to his heart. EVERY ONE of them! No exaggeration.
For example, knowing Alex would not be able to partake in normal Halloween trick-or-treating, the TCC staff visited his room in full costume to brighten his day and bring him treats. Moreover, knowing his penchant to ask questions with every person he meets (and after hearing our stories of Halloweens past), Alex’s nurses constructed a large question mark symbol for Alex to wear on his chest as Question Boy! To top it off, a respiratory therapist named Curtis came dressed to the hilt as Captain America after Alex told him he looks like Chris Evans, the actor, just the day prior. These simple, caring, and genuine acts of kindness and love helped Alex carry a smile and a happy heart to endure the long week of tests, pokes, and prodding. More importantly to us, they helped to lessen the impact of life with Duchenne.
Yet, late in the week, we were reminded of why we were at Children’s Hospital as reality with Duchenne reared its ugly and unwelcome head…as it always does no matter how hard you try to ignore it.
Late on Thursday evening, Kristy and I sat in a small room, around a small round table, with Dr. Sawnani, Alex’s pulmonologist, and leading care doctor. He wanted to talk with us alone, away from distraction, to discuss the challenging road ahead. He wanted our minds wrapped around realities and certainties. He wanted us to know the path we were on. We discussed pulmonary and cardiac progressions. We discussed muscular and skeletal discomforts, many like Alex was experiencing now. We discussed impacts on families, relationships, and most importantly our son. We discussed advanced care directives and how best to promote them. We listened attentively, challenged where necessary, and acknowledged reluctantly.
The meeting confirmed conversations Alex and I had with psychology, psychiatry, and palliative care on how best to manage Alex’s pain and anxiety in the face of Duchenne. We welcomed the team-approach to life with the monster, that has clearly moved beyond mobility, pulmonary, and heart issues and into new territories of coping, understanding, and reality.
Then, perhaps fittingly, after a Friday morning cardiac MRI showed no significant decrease in heart function (most notably his heart’s ejection fraction, or EF) and an overnight Holter monitor showed good heart rhythm, our ability to cope with Duchenne was put to the test. Or, perhaps, Duchenne just wanted the last laugh, I don’t know. Either way, late Friday was simply as demoralizing as demoralizing can get.
After a zoledronic acid infusion and testosterone injection to help strengthen his bones, a heavy pain med to lighten the load for the trip home, and a flu shot, Duchenne sucked the wind from our sails and kicked us to the curb yet again. We were soooo close to leaving. We were soooo close to getting home. We had been officially discharged, signed paperwork and all! Instead, Duchenne stabbed Alex in the back, literally.
Our final act was to hoist Alex from his hospital bed and into his wheelchair for the trip home in our accessible van. We had practiced the hoist with dedicated physical therapists throughout the week…each time with success! We had their blessing the hoist and lift were performed correctly for patients with such severe back pain! They encouraged Alex to push through any discomfort, though said it would be minimal with the heavy dose of pain meds he had been given. But, as we too often find out, Duchenne had other plans.
As we slowly hoisted Alex, millimeters at a time, searing pain and heartbreak struck hard. Barely inches off his bed, Alex screamed that that his back was breaking with the slightest of bends in the custom sling designed for delicate maneuvers. We stopped and considered whether to encourage him to push through the pain and move into his wheelchair. We were SOOOO close to going home!
However, his loud and intensifying screams told us to abandon all efforts and lower him back down…immediately! Although the physical therapists encouraged another try, we declined. I had seen that look of terror in Alex’s eyes before (the night before his Senior awards assembly that led to his missing his high school graduation). This pain was real! We weren’t going anywhere.
We were then readmitted to the hospital until we could figure out how to get him home.
That night, the emotional side of Duchenne kicked into gear and the questions flooded back. This incredibly positive young man looked me in the eye and wondered if his life held value. He asked if he had purpose. He asked if this new life in bed was all there was for him to look forward to. What if my back never gets better, Dad? What if I can no longer get out of bed? What if it only gets worse? What if…?
I could only listen, acknowledge, and offer support as best possible.
His pain is not just physical anymore. As he stared again at the ceiling that night, he looked inward and expressed his worry outward. While his eyes focused somewhere above, he stared Duchenne directly in the face. It’s a scary thing to do.
He hasn’t done that very often. Alex is such a positive kid that sometimes he doesn’t even think he has Duchenne. To him, he lives a normal life, just like any other kid, just that he sits or lays down more than others. Sure, he is aware of his limitations. Yes, he knows his body does not move like others. But, his mind is sharp as a tack. He laughs and jokes with the subtlest of clues and smiles wide and often as much as he can. Those who have met him will agree. His happiness is a beautiful reminder of how life should be lived.
But, when that smile fades and when that laughter is swallowed, what then? THAT pain was visible that Friday night. THAT pain was emerging to the forefront. THAT pain is what we experienced arguably the first time and certainly not the last. And, to a degree, THAT pain was not just confined to our son.
I went home the next morning and moved (with the help of strong and awesome neighbors) Alex’s bedroom from the second floor to the first floor, into the space of my old office. On Sunday, we called for another ambulance ride to transport him home. The trip was less chaotic than the one to the hospital a week before. No sirens. No pain. No stairs to navigate. A simple transition from gurney to bed, that now resides on the first floor. Once settled and in the comforts of his bed, in his new room, Alex summed up his perspective after a heavy sigh.
“Dad,” he said. “My everything hurts.”
“I know, Bud. I know,” I shared equal exhaustion and frustration and then encouraged. “But, we’re here for you! All of us. You, me, Mom, Kaitlyn, John…everyone...even our dog, Toby (pictured above). And, you know what…we got this...together!”
It’s all you can really say.
After a deep sigh, I turned towards Alex and praised him. “You did it, Bud! I know it was hard. I know it wasn’t easy.” I raised his hand in mine and squeezed for emphasis. “But, you DID it! You should be very proud of yourself!”
He was, I knew. Still, it’s always nice to hear it from others. Alex turned his head towards me and then smiled with tired accomplishment and appreciation. “Thanks, Dad.”
We held eye contact for a while before his head turned back, his smile faded, and his gaze drifted back towards the fluorescent lighting shining softly above us. He seemed lost in thought, but I knew what he was thinking. I had seen that look before.
It had been a hard trip for Alex, out of his bedroom and into the Cincinnati Children’s Hospital. Thankfully, the ambulance transport had been smooth and uneventful. Thankfully, the six-person Emergency triage team had expertly slid Alex from his gurney to the bed in which he now reclined. Thankfully, he had endured back x-rays without too much discomfort. Thankfully, Alex had resumed his social skills with everyone he met and now rested comfortably in our temporary room. Away from the chaotic sounds of the Emergency triage, we awaited further direction of our journey to assess Alex’s back pain and Duchenne’s evil progression.
It was a long wait.
We passed the time with random conversations of movies, TV shows, and friends. As only fatigue and boredom can derive, we animated the accents (Indian, Russian, British) and wisdom of Alex’s many doctors who we knew all too well and who we would surely visit during the week. We enjoyed a late-night visit from Kaitlyn and John who kindly brought us dinner (Penn Station and Chipotle!) and helped Alex feel at ease with his hospital stay.
But, with every lull in imagination, pause in conversation, or visitor exit from our room, you could see Alex’s thoughts drift back into the void. You could see his thoughts wander and feel his grip loosen from mine as he stared into the light above and contemplated his new reality.
When I looked up, it seemed I could see it, too.
After we had been transferred to our exotic, glass-walled room in the Transitional Care Center (TCC) on the 3rd floor of Building A, Alex again looked towards the ceiling. He was exhausted, but you could see his thoughts still brewing. This time, the questions pushed through. It was near 2AM.
“Dad, will my back ever get better?” he whispered with tired hoarseness from the long day and night. Normally a talkative kid, Alex didn’t say anything more. He didn’t need to. Fatigue ruled the moment and his tone, though the question rang loud and clear. I sighed in understanding, and equal fatigue, and then replied quietly.
“It will, Bud. It will. Just give it some time. The doctors will help us.” I answered him honestly, though admittedly sought to delay an expanded conversation. I knew what he was seeking. I knew what he wanted to hear. He wanted solutions. He wanted answers. He wanted to be pain-free again so he could enjoy life as he wants. As anyone wants. Was that too much to ask?
“But, what if it doesn’t?” He sleepily persisted. “What if my back will be like this forever?” You could feel despair creeping into his mind.
I did not respond immediately. His question was valid. Heck, I thought about it, too. What IF his back did not improve? What IF this is his life moving forward? What IF this was as good as it gets? I hesitated to reply as because I knew the length of discussion it would encourage. His questions required full attention. Alex’s closing eyelids told me the conversation could wait.
“Let’s get some sleep, Bud,” I told him. “Tomorrow will be here before we know it.” Alex nodded and then asked for a hug as he always does before bed. I did, kissed his forehead, and then lay down on the comfortable fold-out chair beside him. I knew we had a hard week ahead. I knew his difficult questions would return another time. As I contemplated how to respond, the rhythmic pulse of his Bi-PAP lulled us both to sleep.
You see, physical challenges are only half the battle with Duchenne. Sometimes, physical challenges lead your son to boundaries of despair where he questions his health, his present, and his future. Sometimes, the questions are triggered by acute pain or prolonged periods of discomfort. Sometimes, they appear out of nowhere. Sometimes, you can see them coming. When they do, your son questions his self-worth, value, or even life itself, no matter how positive he may seem. He asks will I EVER get better? is THIS my life? or any other such difficult questions that weave into conversation when you least expect them and linger longer than you would prefer. Sometimes, the questions are uncharacteristic of him and surprising, like do I have purpose? do I make a difference? do I have value? Sometimes, they are downright frightening, like should I even live?
When you hear such questions, you realize Duchenne in all its rawness. You see the disease beyond immobility and inability. You know it beyond isolation and loneliness. You feel it beyond pain and despair. When you hear such questions, you clearly understand our shared humanity and impact upon one another. You tell your son he DOES have purpose, he DOES make a difference, and his life IS important, just as much as anyone. You remind him how much you love him and how much he is loved by others, some he may never know. You tell him not to worry and that you are here for him…always. You are thankful, so very thankful, for others who express to him the same.
Like the very next morning in the TCC. Oh, how Alex needed this! Oh, how WE needed this!
Our morning started with frequent visits from nurses checking vital signs and administering medications to respiratory therapists adjusting pulmonary settings and mask fittings to doctors making rounds and listening to lungs breathe. The day continued with dutiful smiles and friendly encouragements. But, they all seemed so professional, so determined and businesslike. Such is life in a hospital.
Then, while enjoying a late breakfast of bagels and cream cheese, we were greeted by a knock on the door and a tangled parting of curtains that covered our glass door. To our pleasant surprise, in walked Courtney, a nurse from Neurology who Alex has known for years! Those who have followed this blog know how special she is to Alex and how she is one of Alex’s favorite people at Children’s Hospital.
“Hey, Buddy!” Courtney (aka Sara Silverman) exclaimed after comically untangling herself from the curtains. “How’re you doing?” She wore a huge, genuine, smile on her face as she approached his bedside.
Alex beamed with happiness for seeing a longtime friend. Holding a bagel piece still in my hand, I backed away from Alex’s mouth and allowed the two to reconnect. Her visit had come at the perfect time!
“I heard you were in the hospital so I wanted to stop by and see how you’re doing, Buddy!” Alex smiled wide for her thoughtfulness and kindness. Courtney then turned and pointed to the still-ruffling curtains. “And, look who I brought with me!” We followed her direction as the curtains tangled and parted again.
In walked Kenny-Benny flashing an equally large and energizing smile! Kenny-Benny is a longtime friend of Alex’s from the check-in registration desk at the Duchenne clinic, and he always puts a smile on Alex’s face. Today was no exception! Perhaps the biggest ever!
“How ya doing, my man?” Kenny-Benny asked as he, too, approached Alex’s bedside and then extended his trademark fist-bump alongside Courtney. And so began a 15-20 minute visit that fueled Alex for the upcoming week. Pain? What pain? Duchenne? What Duchenne? THESE interactions were just what the doctor ordered and, arguably, validated every ounce of effort to get to Children’s Hospital.
The welcome human interactions didn’t stop there.
Throughout the week, Alex befriended three shifts of nurses, practitioners, respiratory therapists, physical therapists, cafeteria food delivery personnel, and linen custodians. Throw in fellows, interns, and doctors from pulmonary, cardiology, endocrinology, neurology, psychology, psychiatry, physical therapy, rehabilitation, and palliative care, and our room seemed like a revolving door of visitors, friends, and soon-to-be-friends. Each and every one brought a smile to Alex’s face and joy to his heart. EVERY ONE of them! No exaggeration.
For example, knowing Alex would not be able to partake in normal Halloween trick-or-treating, the TCC staff visited his room in full costume to brighten his day and bring him treats. Moreover, knowing his penchant to ask questions with every person he meets (and after hearing our stories of Halloweens past), Alex’s nurses constructed a large question mark symbol for Alex to wear on his chest as Question Boy! To top it off, a respiratory therapist named Curtis came dressed to the hilt as Captain America after Alex told him he looks like Chris Evans, the actor, just the day prior. These simple, caring, and genuine acts of kindness and love helped Alex carry a smile and a happy heart to endure the long week of tests, pokes, and prodding. More importantly to us, they helped to lessen the impact of life with Duchenne.
Yet, late in the week, we were reminded of why we were at Children’s Hospital as reality with Duchenne reared its ugly and unwelcome head…as it always does no matter how hard you try to ignore it.
Late on Thursday evening, Kristy and I sat in a small room, around a small round table, with Dr. Sawnani, Alex’s pulmonologist, and leading care doctor. He wanted to talk with us alone, away from distraction, to discuss the challenging road ahead. He wanted our minds wrapped around realities and certainties. He wanted us to know the path we were on. We discussed pulmonary and cardiac progressions. We discussed muscular and skeletal discomforts, many like Alex was experiencing now. We discussed impacts on families, relationships, and most importantly our son. We discussed advanced care directives and how best to promote them. We listened attentively, challenged where necessary, and acknowledged reluctantly.
The meeting confirmed conversations Alex and I had with psychology, psychiatry, and palliative care on how best to manage Alex’s pain and anxiety in the face of Duchenne. We welcomed the team-approach to life with the monster, that has clearly moved beyond mobility, pulmonary, and heart issues and into new territories of coping, understanding, and reality.
Then, perhaps fittingly, after a Friday morning cardiac MRI showed no significant decrease in heart function (most notably his heart’s ejection fraction, or EF) and an overnight Holter monitor showed good heart rhythm, our ability to cope with Duchenne was put to the test. Or, perhaps, Duchenne just wanted the last laugh, I don’t know. Either way, late Friday was simply as demoralizing as demoralizing can get.
After a zoledronic acid infusion and testosterone injection to help strengthen his bones, a heavy pain med to lighten the load for the trip home, and a flu shot, Duchenne sucked the wind from our sails and kicked us to the curb yet again. We were soooo close to leaving. We were soooo close to getting home. We had been officially discharged, signed paperwork and all! Instead, Duchenne stabbed Alex in the back, literally.
Our final act was to hoist Alex from his hospital bed and into his wheelchair for the trip home in our accessible van. We had practiced the hoist with dedicated physical therapists throughout the week…each time with success! We had their blessing the hoist and lift were performed correctly for patients with such severe back pain! They encouraged Alex to push through any discomfort, though said it would be minimal with the heavy dose of pain meds he had been given. But, as we too often find out, Duchenne had other plans.
As we slowly hoisted Alex, millimeters at a time, searing pain and heartbreak struck hard. Barely inches off his bed, Alex screamed that that his back was breaking with the slightest of bends in the custom sling designed for delicate maneuvers. We stopped and considered whether to encourage him to push through the pain and move into his wheelchair. We were SOOOO close to going home!
However, his loud and intensifying screams told us to abandon all efforts and lower him back down…immediately! Although the physical therapists encouraged another try, we declined. I had seen that look of terror in Alex’s eyes before (the night before his Senior awards assembly that led to his missing his high school graduation). This pain was real! We weren’t going anywhere.
We were then readmitted to the hospital until we could figure out how to get him home.
That night, the emotional side of Duchenne kicked into gear and the questions flooded back. This incredibly positive young man looked me in the eye and wondered if his life held value. He asked if he had purpose. He asked if this new life in bed was all there was for him to look forward to. What if my back never gets better, Dad? What if I can no longer get out of bed? What if it only gets worse? What if…?
I could only listen, acknowledge, and offer support as best possible.
His pain is not just physical anymore. As he stared again at the ceiling that night, he looked inward and expressed his worry outward. While his eyes focused somewhere above, he stared Duchenne directly in the face. It’s a scary thing to do.
He hasn’t done that very often. Alex is such a positive kid that sometimes he doesn’t even think he has Duchenne. To him, he lives a normal life, just like any other kid, just that he sits or lays down more than others. Sure, he is aware of his limitations. Yes, he knows his body does not move like others. But, his mind is sharp as a tack. He laughs and jokes with the subtlest of clues and smiles wide and often as much as he can. Those who have met him will agree. His happiness is a beautiful reminder of how life should be lived.
But, when that smile fades and when that laughter is swallowed, what then? THAT pain was visible that Friday night. THAT pain was emerging to the forefront. THAT pain is what we experienced arguably the first time and certainly not the last. And, to a degree, THAT pain was not just confined to our son.
I went home the next morning and moved (with the help of strong and awesome neighbors) Alex’s bedroom from the second floor to the first floor, into the space of my old office. On Sunday, we called for another ambulance ride to transport him home. The trip was less chaotic than the one to the hospital a week before. No sirens. No pain. No stairs to navigate. A simple transition from gurney to bed, that now resides on the first floor. Once settled and in the comforts of his bed, in his new room, Alex summed up his perspective after a heavy sigh.
“Dad,” he said. “My everything hurts.”
“I know, Bud. I know,” I shared equal exhaustion and frustration and then encouraged. “But, we’re here for you! All of us. You, me, Mom, Kaitlyn, John…everyone...even our dog, Toby (pictured above). And, you know what…we got this...together!”
It’s all you can really say.
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