A Mum’s Journey Navigating Disability Services, Medical Challenges, Faith, and Finding Hope
The first time I wheeled Muji into Fiona Stanley Hospital, my heart was pounding. The bright, echoing corridors and unfamiliar faces felt overwhelming. For 20 years, the team at Perth Children’s Hospital had been our second family. Now, as we rolled past the adult hospital’s bustling reception, I squeezed Muji’s hand and whispered, “We’ve got this, insha’Allah (God willing).” In that moment, I remembered that every step we take is by Allah’s will, and every challenge is an opportunity to show gratitude and trust in His wisdom.
Muji, my vibrant daughter, communicates with a switch device, uses a wheelchair, and faces challenges with epilepsy, vision, and hearing. She’s taught me more about resilience, gratitude, and the mercy of Allah than I ever imagined possible.
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Managing Spasticity and Understanding Muji’s Reactions
One of the most challenging parts of Muji’s care is managing her spasticity. Her muscles often become so tight that even simple tasks—like dressing her—require patience, strength, and deep sensitivity. When her arms are stiff and pulled tightly against her body, I have to move slowly and gently. If I pull too hard, she frowns—not just from pain, but as if to say, “Please be careful, Mama.” That frown is her way of speaking to me, and I’ve learned to listen closely.
There was a day when Muji kept sighing and turning away during her therapy session. Instead of pushing her, the therapist paused. We realized she needed a break and a gentle massage. Her relief was immediate, and the rest of the session went smoothly. That day, I was reminded how important it is to listen to the signals Allah gives us, even when they’re silent.
These moments, though difficult, have taught me so much about Muji’s unspoken language. A deep sigh might mean she’s tired or uncomfortable. A sudden smile tells me she’s enjoying a moment of connection. And sometimes, she surprises me with laughter—like the time I was rushing us out the door, late for an appointment, and she looked at me in the rear view mirror with a twinkle in her eye, as if to say, “It’s not my fault—you’re the one who got ready at the last minute!” Her humor is a mercy from Allah, a reminder to slow down and find light even in the chaos.
“Even without words, Muji makes herself heard. Her frown says ‘that hurts,’ her smile says ‘I’m happy,’ and her laughter says, ‘I’m still here with you, Mama.’”
At Perth Children’s Hospital, Muji received regular Botox injections from the age of three to help ease her muscle tightness. It made such a difference to her comfort and our daily routines. But after transitioning to adult care at FSH, we faced a long gap—two years without access to Botox, followed by another year on a waiting list. During that time, I watched her mobility decline and her discomfort increase. It was heartbreaking and, at times, left me feeling completely lost and invisible within the adult healthcare system.
Once, after months on the waiting list, I finally sat down with a new neurologist and explained how Muji’s frown meant pain and her sigh meant exhaustion. The doctor listened, and for the first time in a long while, I felt Muji was truly seen. That small victory was a blessing I thanked Allah for that evening.
In those moments, I often reminded myself of the Qur’anic promise:
“Indeed, with hardship comes ease.” (Qur’an 94:6)
And I would whisper Alhamdulillah for the small things—like a day with fewer spasms, or a moment when Muji smiled through the struggle. Her reactions, subtle as they may be, are a gift. They remind me that she is fully present, fully feeling, and fully human. Every frown, every smile, every sigh is a mercy from Allah, guiding me to respond with gratitude and humility.
The Stress of Medication Shortages and Prescriptions
While managing Muji’s muscle tightness is a daily challenge, keeping up with her medications can sometimes feel like a crisis of its own. At FSH, the pharmacy doesn’t accept e-scripts, so I have to specifically request paper prescriptions from her doctors—especially for non-PBS or emergency medications. This extra step can be stressful, and the pressure intensifies when local pharmacies run out of stock, as has happened recently with Muji’s emergency seizure medication.
Recently, we faced one of our most terrifying experiences: Muji’s emergency seizure medication was out of stock at every pharmacy I contacted. That day, when she began seizing and we had no medication on hand, I had no choice but to call 000. Watching her seize for more than 20 minutes until the paramedics arrived and administered the medication was agonizing. The relief when the medication finally stopped her seizures was overwhelming—a moment that brought both tears and gratitude. I wrote about this in my previous post, but the memory still shakes me. It reminded me how precarious our sense of stability can be and how quickly stress and fear can take hold when the safety net of medication runs out.
There was a day when every pharmacy I called was out of Muji’s seizure medication. As the hours dragged on, I felt panic rising. I paused, made du’a, and repeated to myself, “Indeed, with hardship comes ease.” By evening, a hospital pharmacist found a spare bottle for us. Alhamdulillah, that test became a lesson in patience and trust.
The one silver lining is that hospital pharmacies often offer better prices, which helps us manage the ongoing costs of her care—but only if I can get the right script in time.
Navigating New Routines and Unexpected Hurdles
These logistical challenges are just one part of a much bigger picture. Adapting to new hospital routines and systems has tested our patience and resilience in unexpected ways.
Our medical team is the backbone of Muji’s care. Her neurologist helps us manage seizures; her rehabilitation doctor administers Botox to ease muscle tightness. Dental care is another mountain to climb—Muji’s sensitivity means even brushing her teeth is a struggle, and any dental work requires general anaesthesia. Waiting lists for all these specialists can stretch for years. I’ve learned to celebrate small victories: a successful appointment, a kind nurse who remembers Muji’s favorite phrase "Stay Blessed", a day with fewer seizures.
The process for replacing Muji’s PEG-J tube also changed drastically. At PCH, it was a quick radiology procedure. At FSH, it’s endoscopic—more invasive, requiring deeper sedation and longer recovery. Watching Muji struggle through the discomfort was a hard lesson in letting go of the familiar.
Finding Joy and Humor
Even in the hardest moments, Muji’s humor and spirit keep us going. Despite all the challenges, she has a wonderful sense of humor and a way of bringing joy wherever she goes.
During a long hospital wait, a nurse noticed Muji’s Dr. Martens and knelt down to show off her own floral pair. Muji’s eyes lit up and she grinned, reminding me that joy can bloom in the most unlikely places.
I remember one time her neurologist called over a nurse who was wearing flower-patterned Dr. Martens—she was so excited to meet Muji and compare boots!
Muji loves using her communication device, which we call her “talker.” She always finds ways to make us smile. Once, she used her talker to say, “Let’s do fun activities—go to hospital!” I immediately said, “No!” Another time, at her first neurology appointment at FSH, she greeted her neurologist with “Long time no see!” using her talker. Moments like these remind me of her bright spirit and how much she connects with those around her.
“Muji has a wonderful sense of humor and a way of bringing joy wherever she goes.”
Staying Connected and Supported
But navigating this journey would be impossible without the right support. Coordinating care across departments is a full-time job. Thankfully, Western Australia’s Digital Medical Record (DMR) system means Muji’s history is accessible to her providers. I keep everything updated and advocate fiercely for clear communication. The NDIS has been a lifeline, covering therapies, equipment, and support workers—each essential to Muji’s quality of life.
FSH is designed for adults, so we had to learn new layouts and routines. I made sure Muji’s communication device worked in every new setting. Emotionally, the shift was huge. Gone were the bright murals and child-friendly spaces; in their place, clinical white walls and new faces. Building trust with new doctors took time and patience. I brought a detailed care plan to every appointment, determined to help the team see Muji for the wonderful person she is.
Finding Light in the Journey
Transitioning from PCH to FSH has been one of our biggest challenges, but also a step forward for Muji’s care. Planning early, leaning on the NDIS, and advocating for Muji’s needs have helped us find our way. Through every setback and success, I remind myself: we are not alone. As Allah says in the Qur’an:
“If you are grateful, I will surely increase you [in favour]…”
(Qur’an 14:7)
Before every hospital procedure, I recite Ayat al-Kursi softly for Muji and myself. It brings us both calm, and I trust that Allah’s protection surrounds her, even when I feel powerless.
And as the Prophet Muhammad ﷺ said:
“How excellent is the affair of the believer! If something good happens to him, he is grateful and that is good for him; and if something bad happens to him, he bears it with patience and that is good for him.”
(Sahih Muslim)
If you’re navigating a similar journey, here’s an example of how Muji’s support network and appointments have been structured over the years:
Tips for Other Parents Navigating Hospital Transitions
Start planning early. Begin the transition process well before your child turns 18 or 21.
Keep detailed records. Bring a comprehensive care plan and update it regularly.
Advocate for your child. Don’t hesitate to speak up if something doesn’t feel right or if you need more support.
Request paper prescriptions. Especially for non-PBS or emergency medications, always ask for a paper script to avoid pharmacy delays.
Lean on your support network. Connect with other parents, support workers, and the NDIS for help and advice.
Celebrate small wins. Notice and cherish the moments of progress, humor, and connection.
Trust in Allah’s wisdom. Remember that every test is an opportunity for reward and growth.
Have you ever felt invisible in the healthcare system? What little victories keep you going? I’d love to hear your stories in the comments.
May Allah grant strength, patience, and ease to all families on this journey.
Muji’s mum
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