💫 What I’ve Been Noticing
There’s a quiet kind of communication between us—made not of words, but of weight and stillness.
Muji doesn’t speak with her voice. She has cerebral palsy and is non-verbal. But she speaks all the time. In her breath. In the way her body curls when something’s uncomfortable. In how she turns her face gently away when she’s had enough. You just have to listen differently.
Lately, her head rests forward more often—chin tucked softly into her chest. Her spine folds into a gentle C-shape when seated. And her gastrostomy tube? It presses inward, caught in that curve, sometimes leaving a quiet red mark that lingers like a whisper of friction.
At physio, Muji has started showing signs of fatigue. A small pull away. A pause in her breath. Her physio, beautifully attuned, has responded with shortened sessions and deep respect for her pace. And I’m learning to do the same—following her lead, trusting her cues.
🪑 Muji’s Custom Seat Journey
Because comfort isn't a luxury. It's dignity, breath, and ease—all shaped with care.
🗓 Step 1: Postural Assessment – Completed With OT and senior physio—observed her curves, her stillness, her strength.
📏 Step 2: Seating Technician Appointment – Next For measurements and quotation for her custom seat.
📝 Step 3: AT Application to NDIS – To Be Submitted Submitted by OT with assessments and supporting documentation.
⏳ Step 4: Waiting for Approval – The part we can't rush, even when her needs don’t wait.
🔧 Step 5: 4–5 Fittings – To shape, adjust, and test until her body feels held—not fitted, but honoured.
🌿 Meanwhile, At Home
We’re not just waiting. We’re responding.
Morning stretches begin with breath, a warm palm behind her neck, a soft du’a whispered into stillness.
Midday support includes floor time with cushions, inclined tummy rests, or upright cuddles guided by instinct.
Evening care brings gentle massage, quiet recitation of the Qur'an, and a moment to log what her body told me that day.
I’ve created a tracker to note her pain and comfort—a shared map between my intuition and her care team. We’re building our understanding, one cue at a time.
🗣️ When Her Words Appear
The other night, her support worker asked gently, “How are you feeling tonight, Muji?”
She tapped her Tobii Dynavox—her “talker,” as we call it.
“So far so good—not.”
It was perfect. Wry. Honest. Entirely hers. This is the magic of her device—not just assistive tech, but access. To humor. Timing. Truth.
Sometimes her voice is digital. Sometimes it’s in a sigh or a gaze. Always, it’s hers.
🌌 What Her Voice Has Taught Me
“I’ve come to believe that listening—truly listening—isn’t about waiting for words. It’s about softening into presence.”
Muji does have a voice. It's layered. Luminous. Unmistakably hers.
It shows up in posture, in breath, in the arch of her brow. It shows up when she chooses not to speak—and also when she does.
And so I listen. With my eyes. With my hands. With my whole being.
“Ya Allah, soften what is tense in her body. Let her discomfort be met with compassion. Let her fatigue be answered with mercy. And let my noticing count, even when I can’t do more.”
Until next post, stay blessed!
Muji's mum/Nur
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