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A Day-by-Day Journey; The Unseen Challenge of Lymphedema



Hey there, friends, moms and dads who, like me, are on this rollercoaster ride of lymphedema. We share the laughter, the tears, the love, and the unbreakable spirit of our kids. But there's one aspect of this journey that often goes unseen, yet it's a demanding part of our everyday lives: the treatment.


The moment my child was diagnosed with primary lymphedema, our world changed forever. It was like being handed a roadmap through uncharted territory. The word "lymphedema" itself sounded mysterious and heavy, but I was ready to face it head-on.


What I didn't fully comprehend at the time was the sheer physical demands of this disease. It's a day-in and day-out reality with no off days. Here's what it's like for both our children and us parents:


For Our Kids:


1. Compression Garments: Our little heroes become warriors every morning when we put on those compression garments. It's not just dressing; it's a ritual of strength and endurance. They may be colorful, but they're like a suit of armor against the swelling.


2. Lymphatic Drainage: Some children go through daily lymphatic drainage sessions. It's a gentle but necessary massage to stimulate lymph flow. They may not fully understand it, but they bear it with patience.


3. Multi-Layer Bandage: Ah, the multi-layer bandaging days! Ever tried rolling those bandages without them unraveling halfway? It's like a tricky dance sometimes. And let's be honest, some days our kids aren't thrilled about it. Wrapping can be a bit of a challenge, with rolls dropping or twists not going quite right. But even on those days, our little troopers hang in there. They might grumble a bit (who wouldn't?), but they know it's all part of the deal to keep that swelling in check.


4. Exercise Regimen: Exercise is essential for managing lymphedema. Our children participate in daily exercises to keep their muscles and lymphatic system engaged. It's a commitment, but they tackle it with determination.


5. Self-Perception and Mental Resilience: You know, being one of the few kids around with lymphedema can make our little ones feel a tad different sometimes. They notice they're the only ones in the playground with a bigger limb, compression garments, and or needing multi-layer bandaging. It's natural for them to have those 'Why me?' moments in their heads. But let me tell you, behind those brave little smiles, they're dealing with it. They might not always talk about it, but they're figuring out their own way to feel good in their skin. It's not just about the bandages and routines; it's about their own journey of self-acceptance and growing confidence. They're teaching us a thing or two about resilience every single day.


For Us Parents:


1. Morning Routine: Mornings become an intricate ballet of garments, massages, and encouragement. It's a routine that's essential for our children's well-being but can be physically demanding.


2. Emotional Support: Beyond the physical aspects, we're on call 24/7 to provide emotional support. Watching our children struggle can be physically draining, but we find the strength to comfort them.


3. Lifting and Carrying: As parents, we often find ourselves lifting our children or carrying them when they're tired or in pain. This can be physically challenging, especially as they grow.


4. Household Adjustments: We make countless adjustments in our homes to accommodate the special needs of our children. Whether it's creating a comfortable space for treatments or installing handrails, these changes can be physically demanding.


5. Scheduling: We ensure that our outside plans do not interrupt the daily treatment. This commitment to consistency can be physically and mentally challenging, but it's vital for our children's well-being.


In the midst of these physical demands, it's crucial to understand that lymphedema is unique. Unlike many other disease's there's no "pill" or "injection" to watch and see how and when it works. Our physical treatment plan is the "pill/injection." Without it, the disease gets worse. This isn't to say that our journey is harder or easier than others, but it's a distinctive path with its own challenges.


This uniqueness doesn't minimize the heaviness and severity of lymphedema. It's a life-altering disease, and as parents, we do what it takes to ensure our children receive the best care and support they need.


What's important to remember is that it's okay to ask for help. Whether it's reaching out to support groups, seeking advice from healthcare professionals, or just taking a moment for self-care, it's essential to keep our physical and emotional well-being in balance.


Lymphedema may be physically demanding, but it's also a testament to the resilience and strength of our children and us as parents. Together, we navigate the challenges of treatment day in and day out, with no breaks, and we do it with love.


With love and strength,

Jamie

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17. apr.
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Good read. 💙

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