The serene haven I imagine as a respite from rare disease
A columnist envisions a vacation getaway to recharge her family's batteries
My husband and I are parents to two children with rare diseases: CLN2 disease, also known as late-infantile Batten disease, and pulmonary atresia with intact ventricular septum (PA/IVS), a rare, congenital heart disease. We also have a healthy teenage daughter.
My vision is to create an ideal temporary escape from reality for my family; a place where we can evade the daily challenges we face and immerse ourselves in the beauty of nature and the tranquility of a serene environment. Imagine a picturesque location nestled among lush greenery, with crystal-clear waters glistening under the warm sun.
When we arrive at this idyllic destination, a sense of calmness washes over us, lifting the weight of our worries and allowing us to fully embrace the joy of being together as a family.
One of the highlights of our vacation getaway is the beautiful water surrounding us. Whether it’s a pristine beach with soft, powdery sand or a tranquil lake surrounded by towering trees, the allure of the water beckons us to immerse ourselves in its refreshing embrace.
The kids eagerly splash and play, their laughter echoing through the air as they momentarily forget the challenges they face. As the day draws to a close, we are treated to the breathtaking beauty of a sunset as the sky transforms into a canvas. We gather on the beach, hand in hand, and watch in awe as the sun dips below the horizon, casting a warm glow over the water.
In that moment, all our worries fade away, and we are reminded of the preciousness of life and the strength of our family bond.
Of course, amid the beauty and serenity, we can’t ignore the battles that we face as a family. CLN2 and PA/IVS present their own set of challenges, both physically and emotionally. My husband and I have become warriors, fighting tirelessly to provide the best care and support for our children. We navigate a maze of medical appointments, therapies, and research, constantly seeking ways to improve our children’s quality of life.
Our vacation getaway serves as a respite from these battles. It is a haven where we can recharge and find solace in one another’s company. We can create lasting memories and indulge in simple pleasures like building sandcastles, taking long strolls along the shore, and sharing heartfelt conversations with lots of laughter under the starry night sky.
Our journey as a family is not without barriers, but within the confines of our vacation getaway, those barriers would become insignificant. We would find strength in the unity of our love and the unwavering support we provide for one another.
Together, we will conquer the challenges that CLN2 and PA/IVS present, knowing that our bond as a family is unbreakable.
In conclusion, my vision for our family is to create a vacation getaway that allows us to escape the harsh realities of life and embrace the beauty of nature. With the beautiful water and stunning sunsets, we will find solace, strength, and joy.
Our vacation getaway is a symbol of hope, resilience, and the power of love. And in this perfect slice of paradise, we will create cherished memories that will forever hold a special place in our hearts.
Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.
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