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Assalamu alaykum and hello, dear friends.
Every night before I sleep, I look into Muji’s eyes and see love -- a love so pure, a story yet untold. That love drives me. It reminds me that I have more to give, that Muji has a story, and that I must be her voice so her journey can inspire others.
Muji is non-verbal, and I often feel her frustration as she struggles to communicate. I know she longs to express herself, to share her feelings, and to be understood. She needs a voice. And this blog -- this sacred space -- is one way to give her that.
I still remember the moment the doctor announced her brain injury right after she was born. In that instant, my world shattered. I felt lost, drowning in uncertainty, wondering how I would ever navigate this new reality.
But now -- now, 20 years later -- I can see. I can see Muji taking on every challenge, shaping her own journey, and shining her light despite the struggles. I can see that her story is meant to be told, that by sharing it, we offer hope to others walking their own silent paths. And through it all, I know I cannot imagine life without her. She is my heart, my purpose, my greatest gift.
It is for her that I return to writing.
Whether you’ve journeyed with us before or are just discovering this space, welcome to Muji’s Light. The Silent Path -- a reflection of love, faith, and perseverance.
It’s been a long time since I last poured my heart out here, and returning feels both surreal and deeply meaningful. You might remember this blog under a different name, but as life shifts, so do our perspectives. The new name, Muji’s Light. The Silent Path, resonates more profoundly with the lessons we’ve gathered along the way. As Allah reminds us in the Quran (2:269):
"He grants wisdom to whoever He wills. And whoever is granted wisdom is certainly blessed with a great privilege. But none will be mindful of this except people of reason."
The wisdom gained through our journey with Muji has been an immense blessing, shaping our understanding in ways we never expected. It’s this light -- this silent strength -- that I now feel compelled to share once more.
Sharing Our Journey, Connecting Hearts
Life with my amazing daughter Muji, now a vibrant 20-year-old, is a tapestry woven with moments of joy, hardship, and immeasurable love. I believe that by sharing our journey, we can remind others that while our paths may look different, the emotions and experiences at their core are universal.
The Prophet Muhammad (peace be upon him) beautifully described the bond between believers:
"The believer is to the believer like parts of a building, each one supporting the other."(Abu Musa Al-Ash’ari, Sahih Bukhari & Muslim)
By sharing our challenges and triumphs, we find strength in one another -- and that, in itself, is a blessing.
Finding Meaning in the Everyday
In the rhythm of caring for Muji, I’ve discovered profound meaning in moments both big and small. Writing helps me articulate this, reminding me that even the toughest days hold purpose.
Allah says in the Quran (3:191):
"They are those who remember Allah while standing, sitting, and lying on their sides, and reflect on the creation of the heavens and the earth and pray, 'Our Lord! You have not created all of this without purpose. Glory be to You!'"
Everything has meaning—even the trials. And by embracing this perspective, our journey becomes richer, filled with gratitude and understanding.
Leaving a Legacy of Muji’s Beautiful Life
Muji’s life, though shaped by challenges, is one of incredible beauty, resilience, and quiet strength. Through this blog, I hope to honor her journey -- a testimony to her presence and the profound impact she has on everyone around her.
Allah reminds us in the Quran (17:70):
"Indeed, We have dignified the children of Adam..."
Every life holds value, and Muji’s light is a witness to that truth.
Muji at 20: Embracing Life’s Simple Joys
Muji has flourished into a wonderful young woman who finds happiness in the simplest, most beautiful moments:
- She absolutely loves her hydrotherapy sessions at Cockburn Arc, where the feeling of weightlessness in water fills her with joy.
- Audiobooks bring her comfort and adventure, thanks to the Libby app.
- Camping at the beach with family remains one of her greatest joys -- the excitement of a bumpy 4WD ride, the warmth of a campfire, the soothing sound of waves.
- Her Tobii Dynavox device helps her communicate her needs and affection, allowing her independence in expression. Hearing her say "Stay blessed" always reminds me of the Islamic greeting, Assalamu alaykum -- a prayer for peace and well-being.
Muji also enjoys capturing moments through her Tobii Dynavox device. Sometimes, she even shares her perspective on Instagram: @muji_kule
Navigating Challenges with Faith
Life with complex needs also brings struggles -- ones we continue to navigate with faith and perseverance.
One of the hardest battles was Muji’s feeding transition. Before her transition to a PEG tube, she had a PEG-J tube -- a tube that bypassed her stomach, sending food directly into her small intestine. Before PEG-J nothing stayed in her stomach to process. Everything came back up.
Muji vomited more than ten times a day.
No one saw how I held my breath, praying she wouldn’t throw up her feeding. No one felt the dread in my chest when I saw the first signs -- the tightening of her expression, the way her body stiffened just before it happened.
No one saw how the vomit splashed onto my face, my clothes, my arms. The endless washing, the overwhelming smell.
And yet, I did it. Over and over again. Because Muji needed to be clean, comfortable, cared for. Because she deserved to feel at peace in her body.
Allah’s words carried me through these moments of exhaustion and uncertainty:
"Sufficient for us is Allah, and [He is] the best Disposer of affairs."
(Quran 3:175)
With time and careful planning by her dietitian, Muji transitioned back to a PEG tube—a shift that finally allowed her stomach to process food more effectively. With the right medications, her vomiting episodes gradually reduced, bringing much-needed relief to her fragile body. After years of struggle, this change was a breakthrough, easing her discomfort and giving her a sense of physical stability she had long needed.
Another major transition we faced was moving Muji’s care from Perth Children’s Hospital (PCH) to Fiona Stanley Hospital (FSH). Leaving PCH, a place where Muji had received care since childhood, was daunting. The familiarity of her specialists, the routines we had built -- it was hard to let go. But as Muji grew, the move became necessary. Adjusting to a new hospital system wasn’t easy, but, alhamdulillah, we are finding our way with the support of compassionate medical teams.
We will share more about Muji’s ongoing health journey, including details about these transitions, in separate posts soon, insha Allah.
Why “Muji’s Light. The Silent Path” Feels Just Right
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The new name reflects the heart of our journey. In the Quran (57:12), Allah describes the believers on the Day of Judgment:
"On that Day you will see believing men and women with their light shining ahead of them and on their right..."
This verse speaks of an inner radiance -- a light born of faith and perseverance. Muji’s Light embodies this strength, illuminating our path forward. The Silent Path acknowledges the unseen journey of faith, patience, and quiet strength in trusting Allah’s plan, even when the road ahead is uncertain.
Our blog’s description captures it perfectly:
"Through a mother's voice, discover Muji's silent strength—exploring their journey through resilience, loving care, and hope as they navigate life with cerebral palsy, epilepsy, and complex health challenges."
I am truly excited to reconnect with old friends and welcome new readers who might find comfort or inspiration in our experiences.
Thank you for being here. May our words bring warmth, understanding, and connection.
Until next time, stay blessed.
Muji’s mum / Nur 💛
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