A Mother’s Hope Amongst Fear and Uncertainty

A Mother’s Hope Amongst Fear and Uncertainty

The Rollercoaster Ride of Lwanele’s PSARP: The Mother’s Hope Tale

Hello, dear friends! Today, I’m going to share an experience that’s a bit different from our usual light-hearted fare. It’s a tale of anxiety, fear, and ultimately, relief and joy. It’s the story of Lwanele’s mom, and her rollercoaster ride of emotions as her 6-month-old baby underwent a posterior sagittal anorectoplasty (PSARP). Read about a mother’s hope amongst fear and uncertainty.

Yes, Lwanele has a mom, you guys want to he told everything.

Now, if you’re like me and medical jargon makes your head spin, let me simplify it for us. PSARP stands for posterior sagittal anorectoplasty, a surgical technique used to treat a condition called anorectal malformation in some children. Anorectal malformation means the anus and rectum did not form properly during development before birth.

In this procedure, surgeons create an artificial opening for stool to pass through within the child’s sphincter muscle, which is the muscle that normally controls bowel movements. This surgically constructed anus allows the child to have normal bowel movements and urinate normally.

The procedure aims to give the child an anus in a position and with muscle function as close to normal as possible. If I make it simpler doctors will stop doing it. Still sounds scary, right? Well, imagine being the mom of that infant.

That’s where our Mother’s Hope story begins.

Mommy watched as her little bundle of joy was prepared for surgery. The anaesthetic was administered, and the battle began. Lwanele, being the little warrior that he is, fought the anaesthetic with all his might. But eventually, he succumbed, his tiny body going limp in a violent loss of consciousness.

For her, it was like watching her baby take his last breath. The room spun, her heart pounded, and her mind was filled with a million questions. Will he wake up? Will he be, okay?

A Mother’s Hope Amongst Fear and Uncertainty

The Mother’s Tale

Enter Charles Dickens

In the realm of a mother’s heart, where emotions intertwine like delicate tendrils, watching her child go under anaesthesia and undergo surgery is an intricate dance of hope and despair. It is a symphony of emotions that traverses the darkest corners of her fears and reaches for the brightest stars of her hopes. In the canvas of her mind, a tapestry of vivid hues unfolds, depicting the profound journey she embarks upon.

As her child is gently cradled in the arms of anaesthesia, a whirlwind of emotions sweeps over her. Fear, like a tempestuous tempest, rages within her soul, threatening to consume her. The very thought of her precious one surrendering to the depths of unconsciousness sends shivers of anguish through her being. It is as if she is teetering on the precipice of her worst nightmares, grappling with the profound fragility of life itself.

Yet, amidst the churning sea of apprehension, a flicker of faith emerges. It is a beacon of light, softening the edges of her fears and whispering soothing melodies of hope into her heart. With every ounce of her being, she clings to the belief that the skilled hands of the surgeon will guide her child through the stormy waters of the operating theater, navigating the treacherous currents towards a safe haven of healing. After all, the surgeon is very experienced and top of the brass, the “top dog in Africa” as he called himself, a professor in his trade with globally acclaimed surgeries under his nifty fingers.

In the waiting room, a makeshift space really, between elevators along the hospital’s corridors, her heart flutters like a fragile butterfly seeking solace in the blooming gardens of compassion. Time stretches its tendrils, elongating each minute, as she yearns for updates on her little one’s progress. But still, in her ears rings the multitude of prayers rising to heaven on behalf of her boy. Prayers from family, friends, and an entire church ring palpitations in her heart and tighten her faith like a shoelace to a shoe.

Every ding of the elevators, every footstep, every opening of the sliding doors echoes with anticipation, and dread, as if the universe itself holds its breath, waiting for news that will assuage her worries and dispel the shadows of doubt.
Amidst the cacophony of her restless thoughts, her mind weaves intricate patterns of affection and love. She recalls the gentle touch of her child’s tiny fingers, the soft warmth of their embrace, and the melodious laughter that filled their days. These memories, like a celestial lullaby, cradle her spirit and offer respite from the relentless tide of anxiety.

A Mother’s Hope Fulfilled

And then, as if orchestrated by fate, comes the long-awaited news. Her child’s surgery was a success. A symphony of relief and gratitude cascades through her soul, bathing her in a euphoria akin to celestial rays breaking through storm clouds. Tears of joy mingle with tears of exhaustion, as she surrenders to the immense wave of emotions crashing upon the shores of her heart.

Her child’s surgery was a success. A mother’s hope fulfilled.

I was there in that heavy waiting room. As I retell her sitted journey, I remember the compassion that embraced every facet of her experience that day. The full spectrum of her emotions—the fear mingled with faith; the anguish softened by affection. It is a tale that resonates with empathy, uplifts a weary souls, and invites you to embrace, not only the thin line between life and death, but also, the fragility and strength that coexist within the human spirit.

As we reflect upon this tale, let us weave a tapestry of empathy, uplift, and peace. Let us honour the struggles and triumphs of parents who navigate the turbulent waters of their children’s surgeries, including bro Felix who shared his own experience and inspired this piece. And above all, let us celebrate the joy that radiates from the recovery of a cherished little one, for it is a reminder that love, and hope can transcend even the darkest of storms.

Exeunt Charles Dickens

The surgery was over. Lwanele was okay. The relief that washed over his mom was indescribable.

Even greater than the shock when she found out some months later that other children had allegedly died under the care of the same mighty doctor in similar surgeries around the same time as Lwanele’s. The news hit her like a punch in the gut. Imagine a wave of sadness for those families, but also a renewed sense of gratitude that Lwanele’s surgery had gone well.

So, there you have it, folks. A tale of fear, anxiety, and ultimately, relief and joy. It’s a reminder that even in the darkest of times, there’s always a glimmer of hope. And for Lwanele’s mom, that hope was her little warrior, who fought bravely and came out victorious. The hope rode on a God who never disappoints but appoints favour in His appointed time. A support circle of loved and loving ones who stood by her through and through and carried a similar hope, faith, fear, anxiety, relieve, and praise.

And remember, as you give hope, have some kept for yourself.

Want to know more about PSARP? https://www.childrenshospital.org/treatments/psarp

Want to know what other anaestesia episode Lwanele’s mother had? Want to share a story? lwazi@lwanele.online https://www.lwanele.online/#procedures

Juggling Pixels, Playdates, and VACTERL: My Life as a Parent, Designer, and Caregiver

Juggling Pixels, Playdates, and VACTERL: My Life as a Parent, Designer, and Caregiver

What do you call a caregiver who’s also a superhero? A care-bear!

Hello, world! I’m a web and graphic designer, digital marketer, online course addict, undercover teacher, school principal in hiding, and most importantly, a parent to a vibrant, energetic, and incredibly brave 6-year-old, Lwanele. I’m a care bear, angizwa ngawe.

If you remember, Lwanele was born with VACTERL association, a rare congenital disorder that affects multiple body systems. It’s a bit like a surprise party where you never know what’s going to pop out next. We’re not going back to that, read here to catch-up.

Now, you might think that working from home while caring for a special needs child is like trying to juggle flaming swords while riding a unicycle on a tightrope. And you’d be right. But it’s also a lot like trying to design a website – it’s all about balance, creativity, and a whole lot of hasty patience.

When Deadlines Meet Doctor’s Appointments

The biggest challenge is finding time for work when Lwanele needs near constant care and supervision. It’s like trying to design a logo while simultaneously playing a game of timed blitz Chess.

When Deadlines Meet Doctor’s Appointments

Some days, I’m a master at multitasking, juggling client calls with medication schedules, and swapping my graphic tablet for a thermometer. Other days, it feels like I’m trying to code in a foreign language while riding a rollercoaster.

And then there’s the education part. Lwanele is at the age where he should be in a school, but his condition means traditional school isn’t an option, at least for now. That’ll soon change, remember the Bowel Washouts? If you missed that one you can read it here, thanda kab’ uk’salel’ emuva.

Now, back to whatever I was about to tell you… I use my undercover teacher skills too, squeezing in lessons on the alphabet and coding (laugh a little) between client meetings and medical appointments. It’s a bit like trying to design a website while also teaching a class on quantum physics when you’re a history teacher.

When Small Steps Feel Like Giant Leaps

When Small Steps Feel Like Giant Leaps on Cloud 9

But amidst the chaos, there are victories. Like when Lwanele finally discovered that this head is actually above the shoulders when doing the “head, shoulders, knees, and toes” rhyme, or when he managed to sit through an entire Zoom meeting without calling to my clients, “Hello my friends, welcome to Circle Time. What’s your name?” (a miracle in itself!).

When Love Outweighs the Challenges

Despite the challenges, there are also many rewards. I get to see Lwanele’s infectious gappy smile every day, witness his resilience, and be there for all his milestones – big and small. It’s like getting positive feedback from a client, but a thousand times better. Well, unless the client pays some thousands of course.

I also don’t know why I put this picture. But just look at it, nice, isn’t it?

Working from home allows me to be there for Lwanele in a way I wouldn’t be able to if I worked in an office. I can advocate for his needs, ensure he gets the best care, and most importantly, give him the love and support he needs. It’s like being the CEO, creative director, and intern all at once. Or being a therapist trainee, the boss therapist and that elusive consultant that therapists always refer to when making desperate decisions in a haplessly failing therapy session – it’s exhausting, but also incredibly fulfilling.

This doesn’t, however, exclude drama days.

Here’s one… here you shouldn’t laugh I lost a valuable client…

I’d been working tirelessly on a project for my most favourite client, juggling multiple tasks with finesse, as usual. Despite the occasional pressures, determined to meet my deadlines without using “gifted-parenting” as an excuse.

So, this February Tuesday, fully immersed in my work, this little superhero-in-training decides it’s the perfect time to unleash his inner drama king. A full-blown tantrum ensues, complete with dramatic screams, kicks, and flailing limbs. I quickly transform into my superhero alter ego, “The Calminator,” and swoop in to save the day.

I load my secret weapon – a tickle attack! Laughter fills the room as drama king’s tantrum subsides, leaving behind a trail of giggles and smiles.

But alas, all this excitement has caused a slight delay in completing the work. I quickly get back to work, determined to make up for lost time.

When I finally deliver the project to the client, they’re thrilled with the results but express their disappointment about the missed deadline. So, I engage my whatsapp drama voice tone too,

Dear Favourite Client, I want to apologize for the slight delay in delivering the project. You won’t believe the adventure I had as ‘The Calminator’ when my little superhero-in-training decided to showcase his dramatic talents with an impromptu tantrum performance.

But fear not, I swiftly employed my superpowers of patience and tickles to restore peace and harmony. I’m back on track and ready to conquer any deadline that comes my way. Thank you for your understanding and for giving me the opportunity to showcase my superpowers in both design and caregiving!

Client responds swiftly,

That’s very unprofessional and boring of you. I gave you this project for results on time not excuses after parenting. We all have children, but we don’t give excuses. I’ll be watching you in the next project. Your creativity is also having a tuntrum I suppose?

Of course, I read the response to Lwanele, he giggled. He probably thought it was a bedtime story. Maybe it’s because I mentioned that dear client was actually impressed with our creativity before the excuse. Did I mention that we eventually lost that client? That’s what you get for allowing kids in the office. There’s no office by the way. But you do get the point, hey.

So yes it’s confirmed, balancing work and caregiving is a bit like trying to juggle flaming swords while riding a unicycle on a tightrope. But it’s also filled with moments of joy, laughter, and love.

And at the end of the day, that’s what makes it all worth it. As you give me the next gig, let’s engage before it’s an emergency. With Lwanele also, anytime can be prayer time. You quickly must drop your tools and get into song and prayer position. Uyabo?!

Remember, As You Give Care, Take Care.

Want to know more about VACTERL Association? Google it. Want to talk to Lwanele? www.lwanele.online lwazi@lwanele.online