Embracing gratitude: Finding joy and resilience this Thanksgiving
My son Juju, who has Batten disease, has brought a unique light into our lives
As Thanksgiving approaches, the air is filled with a sense of warmth and an invitation to reflect. This time of year invites us to pause and appreciate the little things that make life beautiful, even amidst the challenges we face.
Our family, though small, is tightly knit, and this year we find ourselves embracing the spirit of gratitude in the face of my vibrant son Juju’s journey with CLN2 Batten disease.
Juju has brought a unique light into our lives. His laughter, though sometimes fleeting due to the struggles of his condition, echoes throughout our home, reminding us of the joy that exists within our small family. The holidays have a way of bringing us together, fostering a sense of serenity that allows us to cherish every moment.
Our daughter, Faith, a teenager navigating her own battles, stands strong beside her brother embodying resilience and compassion. Watching her grow into a young woman with remarkable empathy fills my heart with pride.
As we prepare for Thanksgiving, the thought of a large family gathering often dances in the back of my mind. Still, I realize that our small family possesses a profound depth of love and connection that transcends numbers. Our home is not filled with the chaos of a bustling crowd, but rather a calm that allows us to focus on what truly matters: each other.
The bond uniting us
We have crafted our own traditions, from cooking together in the kitchen to sharing heartfelt conversations by the fireplace. These moments remind us that happiness doesn’t stem from the size of our gatherings but from the quality of the relationships we nurture.
My husband, Jonathan, works tirelessly to provide for our family, often juggling multiple responsibilities. His dedication to keeping us afloat is a testament to his love and commitment. I see the weight he carries and it inspires me to rise above my own challenges as a caregiver.
Balancing the demands of Juju’s condition with the needs of our family is no small feat. There are days when exhaustion threatens to overwhelm my spirit, but in those moments, I take a deep breath and remember the blessings we have. Life, despite its hurdles, is a beautiful tapestry woven with threads of love, laughter, and resilience.
I find strength in the simple joys that surround us. Each smile from Juju is a reminder of the brightness that exists even in adversity. His determination to face each day, regardless of the limitations imposed by his illness, fuels my own resolve to be the best mother I can be.
I am constantly learning from him. He teaches me the value of hope and the importance of celebrating small victories. As we gather around the table this Thanksgiving, I will look into the eyes of my family and feel a profound sense of gratitude. We will share our favorite dishes, recount stories of the past year, and express our hopes for the future. In those moments, I will be reminded love is the greatest gift we have.
It’s the bond that unites us, the force that propels us forward, and the light that guides us through even the darkest days. This holiday season, I invite you to reflect on your own journey and the blessings that surround you.
Life is a precious gift, and while it may come with obstacles, it’s also filled with opportunities for growth and connection. As I look at my family — Juju, Faith, and Jonathan — I am overwhelmed with love and gratitude. Together, we navigate the complexities of life, embracing the beauty in every moment.
In the spirit of Thanksgiving, let us cherish the serenity we have cultivated, the love we share, and the strength we find within ourselves. Each day is a blessing, and I am eternally grateful for this life and the incredible family that fills it with joy.
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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