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.
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
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.
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
You are doing well in educating the world about the Vacteral association and your day to day life. It makes it clear and easier to offer support. Continue with both your superpowers creative-caring skills. God is watching and his plans and time remain a mystery until you see it unfold right infront of you.
I say let’s teach that client life lesson. What do you say?
Thank you for your kind words of encouragement. I am glad that my work is making it easier for people to understand the Vacteral association and my day-to-day life. I agree that we should teach that client a life lesson, hahahaha. I believe that everyone has the potential to learn and grow, and I am confident that as we continue to share we will help them see the light. Thank you again for your support.