Henry's Hope

The hope prize was launched in 2024 as an annual prize that looked for story submissions about hope, courage and resilience.

I thought I'd share our family story about Henry's first few years and raising a child with special needs. 

It's a story I didn't want to just exist in my google docs.  Raising a child with special needs can be fairly lonely and almost always stressful. I thought maybe by sharing our story of hope, courage and resilience it might just help someone else.

Now be warned, like a big glass of Milo, I did heap a few extra spoonfuls of symbolism into the story.

I'm still trying different things with my writing and I felt that a story of hope, courage and resilience could cope with the amped up symbolism.

As I said in my blog post, I'm wanting to put together a collection of short stories but this one was a bit of an outlier  with all my other stories containing horror themes.

Hope you enjoy Henry's Hope (click read more below to reveal the story)

The moment Henry was born, my hope for him sparked like flint against steel. Gently cradled by the doctor, my son’s tiny body came into view from beneath the sheet draped over my wife’s lap. Henry’s little body, blue in the doctor’s hands as she manoeuvred him to my wife’s breast in a futile attempt to get him to suckle. 

Upon Henry’s arrival, I’d already been a paramedic for over four years. I was sharp in my craft and I assessed his APGAR score. I evaluated each of the five categories (Appearance, Pulse, Grimace, Activity, and Respiration) on a scale from 0 to 2. Flawlessly birthed babies depicted in films exemplify the type of baby that would receive a perfect score of 10. Henry was not even close to that.

I stared at my newborn son, cyanotic, unresponsive, and floppy. The light of my hope wavered in that moment, like a burning candle touched by a breath of wind. I could quickly see that three categories scored 0 and I couldn’t touch or feel him to assess pulse or respiration, but with his presentation, and with the best score of two from each of those, he would be 4. Total. His condition presented as critical at best.

Henry’s flaccid body briefly rested on my wife’s bare chest before the doctor delicately and swiftly wrapped him in a towel and carried him away. Her comforting words, like wisps of smoke, vanished the moment she took him away, leaving me to meet my wife’s gaze. The nurse was a quick but measured step behind the doctor. With a firm grasp of my wife’s hand, my resilience enveloped the fragile hope we felt for our son like a protective globe around a lantern, attempting to keep safe the precious little light we had.

Anticipation swelled as we waited silently in the delivery room. I knew what they were doing behind the wooden door that separated us. Warmth, stimulation, and oxygen. Long minutes passed, and I watched the door, waiting for the stark light from the corridor to shine into the dimly lit delivery room. 

Finally, the doctor and nurse returned and my heart lifted with relief as Henry’s colour had brightened, and he squirmed as they carefully settled him back onto my wife’s chest. Hope’s intensity was our guiding light through his initial moments, leading us through the dark.

Henry faced challenges in life from that day until this one. However, we were blissfully unaware for the first 18 months. His development differed from his brother’s; he was fussier and slower to develop. Will was ahead of the curve with his milestones, so we gave Henry some extra grace with his development. 

We were told “Kids come along at their own pace.”

Facing challenges, we kept Henry’s hopes alive, tending them like the embers of a campfire.

A turned out foot while Henry cruised along the furniture was all it took for my wife to question if something more was going on. 

Like in the delivery room 18 months earlier, we waited. This time, we waited for the results of his MRI and for the doctor to tell us what was going on. A myriad of potential diagnoses flood your mind. The unknown is scary, like a darkness that lurks around the flame of hope, threatening to devour its light, creating an atmosphere of uncertainty and fear. 

The diagnosis we received was Cerebral Palsy. His condition was no longer shrouded in darkness; instead, now we could shine a spotlight, illuminating what we needed to do. We dedicated ourselves to learning everything about Henry’s condition and supplementing his development with additional therapy.

Henry’s courage and willingness to endure uncomfortable AFOs to correct his out-turned foot added fuel to the flames of our hope, like a log thrown on a fire. Henry’s poor motor function and absence of speech prompted us to introduce additional therapies. With a contagious smile and cheerful laugh, he tackled his weekly Speech, Occupational, and Physiotherapy appointments. Therapists’ own hopes illuminated Henry’s life like a blanket of fairy lights, supplementing our own.

My wife was right then. She knew it was more than a turned foot. 

She was right again when Henry was four. 

During dinner at home, my wife noticed Henry’s head would bob down abruptly, his chin briefly touching his chest before resuming his meal as if nothing had occurred. If you weren’t looking at him, you may dismiss the action as a simple nod of his head. It was rare for individuals with Cerebral Palsy to exhibit new symptoms, but she had little doubt that he was having seizures after doing some further research.

“Why now? What’s changed? What did we miss?”

I gripped my torch of hope that she was wrong. Raising it high above my head against the looming darkness. I had witnessed the debilitating impact seizures could have on someone’s life through my job, and I didn’t want that for my youngest son. We discussed any potentially undiagnosed issues with the doctor and we all agreed further investigation would be required.

The doctor ordered another MRI and EEG. Upon my wife’s request, Henry also underwent genetic testing. Her own exploration (and a memory of Colin Farrell speaking about the difficulties his son faced) had touched on different genetic conditions. 

Henry collected himself new diagnoses, epilepsy and a rare genetic condition called Dup15q. For the record, my wife was almost right. She had been down the rabbit hole of Angelman syndrome, a deletion of the 15th chromosome, whereas Dup15q is a duplication of that chromosome. 

Seizure medications came and went over the years in an effort to control Henry’s seizures. Seventeen different medications and the results varied. Some seem to have little effect, more had no effect, whilst others had a negative effect. The pokes and prods of blood tests did little to dampen Henry’s enthusiasm for life, and a trial of the Ketogenic Diet was only successful in keeping him from his prized McDonald’s chips and not controlling his seizures as intended. 

Our hope intensified with every new medication we introduced. Like oxygen to a flame, our courage breathed life into the flickering embers of hope, igniting it with renewed determination. Our hope would flicker, growing at times, only to be diminished by constant seizures and the side effects of medications, which diminished Henry’s ability to appreciate life’s simple pleasures. Cracks formed and the elements of doubt, fear and apprehension buffered our hope and its light dimmed.

Henry’s good times shape our decisions as we strive to give him the best life possible. He’ll have no grand hopes for his own future and our own hopes for the milestones of his life have had to be adjusted. He will never drive a car. Never work towards a career. Never get married. Never have children of his own.

Henry’s unwavering determination through adversity shines through his infectious laugh, big squeezy hugs, and defiantly cheerful smile, drawing people to him. Everyone that meets him cherishes his gentle and kind nature and they yearn for more. Teachers follow him through the grades, wishing to build on the small successes they have. Support workers and therapists who have long since moved on, keep in contact with my wife, asking how Henry is going.

His resilience remains unyielding. It’s strong like bulletproof glass. But it’s his enduring courage that is one source of our hope, motivating us to persevere, inflaming our hopes for him. He’s living proof that the ability to speak is not a requirement to communicate throughout life and he still has the ability to make his own decisions, whether those decisions are good or bad.

Like when Henry decided he was going to refuse to take his medication orally, the resilience that surrounded our hope felt as though it was being crushed under immense pressure, as if the air itself was closing in on us from all directions. Each morning and night, there was a struggle to get the syringe in his mouth. The arms and legs of our little human octopus would wave and grab for the syringe. He would contort his body constantly as we attempted to wrangle him until, after weeks of battling, Henry realised he didn’t have to fight. He became very compliant and would lie still. Because he realised that once we syringed the medication into his mouth, he understood he could spit it out. We adapted by having his medication made up as suppositories, which he tolerated until he worked out if he squeezed, he could force it out. 

One option available to us was having a PEG tube inserted, but we were determined to avoid the surgery. Our fears and concerns loomed as a gathering of storm clouds, attempting to dim the light of our hope for Henry. Despite our efforts, we could not avoid it and we attempted to find comfort in the positives it might bring.
The surgery went smoothly and the only thing to fear were complications with recovery. My hope was extinguished in the early morning after the surgery. In the hospital’s darkened room, my already fragile resilience exploded into a million pieces, falling away from my hope like shards of broken glass, exposing my vulnerable hope to the overwhelming darkness of my fears and guilt.

Distressed, Henry had woken up abruptly around 1.30am. In the cold hospital room, he sat up in bed, shifting uneasily. As I gazed into my child’s wide eyes, I sensed his rising panic as his breathing quickened. I sat on the bed beside him, attempting to offer him comfort with a hug. With each attempt, Henry pushed himself further away from me. His confusion was evident, but what truly broke my heart was the fear that I witnessed in his eyes. He was incapable of comprehending why his stomach was in pain, and I had no way of explaining it to him, so he would understand.

As a family, we often imagine Henry’s voice and engage in playful conversations. These conversations are usually full of joy and laughter. That night, though, all I could think that he was saying to me was, “What have you done to me?”

As my tears fell, I muffled repeated apologies in the hours that followed, whispering, “I’m sorry. I’m sorry. I’m sorry.” over and over again as I rubbed his back and gave him what little comfort I could.

That image will forever haunt me, etched into my memory to this day. At that moment, I felt like I was a failure as a father. My son, fearful, panicked in that dark room and there was no way for me to console him. My role was to protect him from hurt and harm but I actually allowed someone to inflict that pain upon him.

Three years have passed since Henry had the PEG placed and he’s mostly unaware of its presence. It has proven to be one of the most beneficial choices we made in supporting him. Honestly, it has become somewhat of a cheat code. Your kid feeling unwell and doesn’t want to drink water or electrolytes? No problems, straight through the PEG. Problems with trying to put weight on him? Easy, here’s some supplementing formula through the PEG.

We can’t talk about Henry without talking about William, his older brother. Henry will never know how lucky he got with this exceptional human being in his life. Three years older than Henry, we’re constantly faced with a delicate balance between overwhelming William with the medical traumas of his little brother, while not keeping him oblivious to the situation that surrounds our family. In the chaos of our lives, it’d be easy for him to feel forgotten, but William has fully embraced the important role of being Henry’s big brother. 

We often say that William is Henry’s favourite person in the world. Nobody can make Henry laugh like William can. Their shared laughter in the car as we drive home from school strengthens my resilience. Henry can be peacefully sitting in the car until William arrives, then as soon as William gets in, Henry is babbling to him and engaging in eye contact as they share the backseat together.

William watches his brother suffer through bumps, bruises and hospitalisations. It comes as no surprise that his own resilience encounters pressure and strain. Anxiety and fears he voiced before going away on an annual school camp, “what if something happens to Henry while I’m away?”. 

Fears that have some basis and ones that even I hold for Henry. What will become of Henry once my wife and I have passed away? There is a possibility that William might be Henry’s only remaining family member. The care of Henry is a massive responsibility, care that is delivered by the minute, hour, day, week, month and year, ever changing and evolving. What works for Henry today may not work in 12 months’ time. It’s hard to imagine that we need to pass that onto William while he is still a teenager. Despite his young age, he has proven to possess a remarkable level of maturity and deep love for his brother. 

When William was nine, he came to my wife and I and said that he “wanted to do more to help Henry.” We discussed with him the different way to advocate and raise awareness and at the time, William loved to draw. An idea was born that William could draw pictures of superheroes and sell them through a Facebook page we would help create for him. Superheroes for Super Dupers was born. Instead of paying William directly, those who purchased the pictures were encouraged to contribute to the Dup15q Australia charity in any amount they preferred. It was a tremendous success. His Facebook page and charity efforts received local media coverage, including newspaper articles and radio appearances, which prompted him to expand his fundraising efforts. A generous graphic designer created a logo, and it was placed on merchandise. Each year, people wore blue Superheroes for Super Duper shirts to show support on Rare Disease day. My wife took the initiative to contact multiple landmarks in Townsville and request that they were lit up in the colours representing Rare Disease Day, as part of the global awareness campaign. The first year, we drove around as a family to look at them. Henry slept while we did. But the next year we invited extended family and friends to walk with us to look at the lights. The response overwhelmed us as people who had been with us through our journey with Henry joined the walk with their own families.

Not only did William successfully raise much needed awareness for Dup15q, but he also successfully raised a substantial sum of money for Dup15q Australia. One of our proudest moments for William happened in 2022, when he was recognised for his charity work and awarded the Fred Hollows Young Ambassador award for Queensland after being nominated by his teacher.

My flames of hope burn brightly for William. They cast a mesmerising glow as they lick at the solid glass of resilience that contains it. However, if you scrutinise it closely, you’ll notice barely perceptible cracks that are too delicate to be sensed by touch. They symbolise the trepidation I feel for William’s future, always entwined with the weight of Henry’s future.

Our house brims with memories, every wall adorned with massive frames that showcase our family’s journey throughout the years. Our small humans, William and Henry, growing throughout them. As I study each photo, I not only reminisce about what we were doing at the time but also what we knew about our family in the background. The Santa photo of William and Henry where Henry is sleeping in his wheelchair after suffering a seizure minutes before we arrived. Or a family photo with Minnie Mouse from a trip to Tokyo Disney, where only minutes before the picture, my wife and I had been discussing our concerns about Henry not eating properly. Then I gaze at the photo from our wedding day, before we had the blessing of William and Henry. My new wife and I, completely unaware of what the next 15 years of our life would look like.

Happiness washes over me as I study the photographs, each face beaming back at me with genuine smiles. Those smiles aren’t fake. They aren’t hiding the pain, stress and fears that we had. I see the twinkle in my wife’s eyes when she smiles. It’s always been there, and it’s one thing that I fell in love with. Now, like a star shining in the night sky, that twinkle holds the fiery intensity of a distant sun, bringing hope and light into our lives. I see William’s grin, a fierce reflection of his unwavering resilience towards himself and his family. He possesses a gritty determination when faced with challenging situations that surpass his young age. Henry’s ever-present smile radiates cheerfully, while the echoes of his infectious laughter linger in my thoughts. It’s a laughter that defies adversity, resonating with resilience. In my mind, I envision him as a fearless pirate, confidently perched upon the crow’s nest, bravely facing a tumultuous storm.

This story is more than an account of our challenges raising Henry. Our good times far exceed our bad times and while some may look at us and think, ‘I don’t know how you do it.’ The simple answer is that we do it together. My wife and two sons’ mere presence fills me with the courage to persist and keep pushing forward. 
Even in my deepest despair, when all hope seems lost, something always remains. Search your heart, where hope’s fire once blazed, and discover its enduring warmth. It may be faint, like the charcoal of a spent fire, but it holds the potential to reignite the flame of hope once more.
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