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?!
By Your Side Through and Through with MACE Bowel Washouts
Welcome, fellow superhero parents! Today, we’re diving into the world of living with MACE Bowel Washouts and exploring the challenges and joys from our caregiving point of view. So, grab your cape, put on your invisible invincibility cloak, and let’s tackle these Bowel Washouts together! Spare your five minutes, I spare one – two hours on this daily, be fair!
When your kid needs Bowel Washouts, you become a superhero parent! You learn new skills, face challenges with grace, and celebrate every victory – big or small. Here’s what it’s like on this crazy bowel washout adventure that I started sometime in August 2022.
An appendicostomy is a surgery that allows a child to receive an enema through their belly button or abdomen directly into the beginning part of the colon. The surgery is also known as an antegrade colonic enema, appendicostomy, a Malone procedure, or MACE.
Diapers to Drains
Remember the days of endless diaper changes? Well, strap in, because caring for a child with Bowel Washouts takes it to a whole new level. It can be a rollercoaster ride, especially when you’re new to the procedure. Learning how to clean and care for a surgically created stoma might seem daunting at first, but hey, we parents are experts at adapting and mastering new skills, right?
The Ups and Downs: Brave Troubles
Living with Bowel Washouts comes with its fair share of challenges. Your schedule gets an overhaul, and you navigate awkward conversations. But you’ve got this! You’re a master of time management and talking about poop is your superpower. The bright side? Your kid gains independence and freedom. No more worrying about “accidents.” They can fully participate in activities and adventures! You cheer them on from the sidelines, invisible cape billowing in the wind.
I’ve got the scoop on some tough situations you might face:
Stigma and Awkward Conversations. Let’s be real, talking about bowel movements isn’t the most glamorous topic. There might be moments when you find yourself in those interesting conversations with friends or strangers, explaining your child’s Bowel Washouts. It can be awkward, but remember, we’re raising superstars, and what’s more heroic than tackling stigmatized topics head-on?
Time and Routine Management. Bowel Washouts can require some extra time and planning. Scheduling these Washouts into your already jam-packed day, or evening in my case, can feel overwhelming. But fear not, multitasking masters! With a little creativity and organization, we can conquer time management like nobody’s business. You may want to know that some of the times when I ignore your chats or calls I’ll be listening to the soothing spattering sounds. Cue superhero theme music!
Stoma Care and Potential Complications. Caring for the stoma is a vital part of the routine. Dealing with potential infections, irritation, or prolapse is part of the gig. But fret not, fellow caregivers! With supportive medical professionals, proper hygiene practices, and a sprinkle of superhero resilience, we’ll keep that stoma shining bright.
The Bright Side of the Rectum
Amidst the challenges, there are moments of pure joy and victories that make it all worthwhile (besides the musical splatter, that is). Let’s take a moment to celebrate these highlights:
Regaining Control and Independence. Bowel Washouts give our children a chance to reclaim their independence and control over their bodily functions. From reducing constipation to promoting regular bowel movements, it’s a step towards greater freedom and confidence. Witnessing our little superheroes take charge of their health is the ultimate reward.
Adventure Awaits! Remember when “adventure” meant “avoiding potential accidents”? With Bowel Washouts, our kids can fearlessly embark on new adventures. Whether it’s attending school, sleepovers, cricket matches, museum visits, heading to the amusement park, or participating in activities they love, they can now explore the world without constantly worrying about accidents. Let freedom ring!
Finding Support and Community. As caregiver parents, we’re never alone in this journey. Connecting with other superhero parents facing similar challenges can be a lifeline. Joining support groups or online communities allows us to share experiences, seek advice, and exchange empathetic virtual high-fives. Together, we rinse! oops, sorry together we rise.
By the way, you’re doing amazing, superhero!
Living with Bowel Washouts is no easy feat, but here you are, my fellow superhero parent, rocking it every day. Remember, you’re not alone on this adventure. Reach out for support, celebrate the victories (no matter how small), and shower your little superhero with love and encouragement. Our caregiving journey is filled with challenges and joys, but together, we can conquer anything.
Here Are Some Parting Shots for Living with MACE Bowel Washouts:
Make sure you have a good sense of humour. Living with Bowel Washouts can be challenging, but it’s important to be able to laugh at yourself.
Don’t be afraid to experiment. There are many ways to manage Bowel Washouts, so find what works best for you.
Take care of yourself. Make sure you’re getting enough sleep, eating healthy foods, and exercising regularly.
Live your life! Don’t let the Bowel Washouts hold you back from living your life to the fullest.
So, keep that cape billowing behind you, wear that invincibility cloak with pride, and let’s continue being the superheroes our children need. Together, we’ve got this!
Let's Embrace VACTERL Association and Build a Supportive Community for VACTERL Warriors
In every community, there are folks who could use a little extra love and support. One such group are our VACTERL pals, who have VACTERL Association. This condition can make life more complicated, so let's team up to make their world more awesome! Read up and learn what VACTERL Association is and how you can be helpful.
What's the Deal with VACTERL Association?
VACTERL Association is a rare congenital disorder characterized by a combination of a bunch of birth defects that can occur together and affect multiple systems of the body.
Let's Party with the VACTERL Posse!
Alrighty then, listen up cause we're talking about some serious fun stuff now! Folks with VACTERL association can have all sorts of wacky birth defects. I'm talkin' vertebrae issues, no butts, heart trouble, esophagus problems, wonky kidneys, and limbs that just don't wanna behave!
The number and severity of defects that each VACTERL warrior has to deal with can vary like the weather. Some folks may only have one or two minor defects, while others hit the defect jackpot and have all six!
Now here's the real hoot - nobody knows for sure what causes this condition! The best guess is a combo of your genes and the environment. Now, don't you go pointing fingers at mommies saying, "I know what you ate to make lil' Johnny join the VACTERL posse", cause you don't know. Mommy could even slap you, you know.
So in a nutshell, VACTERL association is like a grab bag of birth defects. You never know quite what you're gonna get! Could be a few funny-looking vertebrae, or it could be no butt, a busted esophagus, and stumpy little arms. The real heroes are the folks rockin' these wacky defects with smiles on their faces. Now that's livin' large!
The acronym "VACTERL" represents specific components of this condition: Some VACTERL warriors may have:
V- Vertebrae issues
A- No butts! Also known as anal atresia.
C- Cardiac or circulatory challenges
T- Tracheoesophageal fistula
E- Esophageal atresia
R- Kidney differences
L- Arm or leg (limb) anomalies
Important: Not all VACTERL posse members will have all these things. Each case is unique!
Source: Pinterest
How to Be a VACTERL All-Star
Now let’s talk about showing some love for our VACTERL friends! Folks with VACTERL Association face some unique challenges, so let's team up and make their world a more awesome place.
1. Education and Awareness:
First thing's first - spread the word! Raise awareness about VACTERL Association within your community. The more folks who know, the more inclusive we can be.
Next, let your VACTERL peeps know you've got their back! Give them a high-five and let them know you're there for them. No need to pretend everything's "fine" - just listen and care.
Do some learning too! The more you understand about VACTERL association, the better equipped you'll be to support your friends. Knowledge is power, y'all!
Make sure your VACTERL friends are included in all the fun. Invite them to parties, activities - anything good that's happening! They deserve to join in the joy.
Offer an ear - and a shoulder - to your VACTERL peeps and their caregivers. Life can throw some curveballs, so just listening can mean the world.
Make your community accessible to all. Wheelchair ramps, ASL interpreters, whatever it takes so everyone can participate! Accessibility rocks.
Finally, DON'T STARE!!! Let them drool in peace. Let them change a diaper without fear of judgement even if they may be 10 years old, who peeps when you're in the loo?
In summary, showing love for your VACTERL friends is easy peasy: spread the word, give them high-fives, learn what you can, include them, listen up, and make your community accessible for all. With a little effort and lots of love, we can make this world a more awesome place for our VACTERL peeps! Now who's ready to party?
2. Supporting Caregivers.
Show some serious love for the amazing caregivers of our VACTERL warrior friends.These folks take on huge responsibilities with grace and grit, so they deserve all the support we can give!
First off, offer to give the caregivers a break now and then. Babysit their VACTERL warrior, help with chores, anything to give them some much-needed respite. Even an hour of free time can recharge their batteries!
Next, connect those caregivers with helpful resources. Introduce them to VACTERL-specific support groups, organizations, services - anything that can make their lives easier. Knowledge is power!
Also, remind those caregivers to take care of themselves too! Encourage them to make time for hobbies, friends, and self-care activities. A healthy and happy caregiver is best equipped to care for others.
And finally, see if there's any way your community can help with the extra medical costs that come with raising a VACTERL warrior. Fundraisers, donation drives, financial aid programs - anything that can lessen the financial burden on those amazing caregivers.
In summary, showing love for the caregivers of our VACTERL warrior friends is simple but important: offer respite, share resources, encourage self-care, and assist with finances if possible. With a little effort and big hearts, we can help lighten the load for those incredible humans who care for our VACTERL friends daily.
Now that's real heroism!
Our community is made more colorful and interesting with the addition of every member, including those with VACTERL Association. So let's get out there, embrace our differences, and party with the VACTERL posse! With love, laughter and a little effort, we can create an awesome community for all. Want to meet one brave VACTERL warrior? Read to Lwanele's story https://www.lwanele.online/
Here are some important links related to VACTERL association:
VACTERL Support Group - https://www.vacterl.org/support-group/ This is an online support group where individuals and families affected by VACTERL association can connect, share experiences, and support each other. Membership is free.
VACTERL Research Studies - https://clinicaltrials.gov/ct2/results?cond=VACTERL+Association This is a list of current and recruiting clinical trials related to VACTERL association. Participating in research studies can help advance knowledge and treatments for the condition.
I hope these links help as resources for individuals and families affected by VACTERL association. Please let me know if you have any other questions! I'd be happy to provide additional information.
