Muji's Light: A Story of Resilience
This is the story of my miraculous Miss M/Muji, my fifth child, who is now 20 years old. Muji's journey began with a difficult birth due to placental abruption, which sadly caused a severe brain injury. This led to her diagnosis of Cerebral Palsy.
Living with Cerebral Palsy
Muji has spastic Cerebral Palsy, which affects her muscle control, making them stiff and tight. She receives Botox injections every six months to help manage this, but she is unable to walk and needs assistance for most movements. She requires a custom wheelchair and standing frame for support and mobility. Due to limited movement, she often suffers from painful bedsores.
Muji's Unique Challenges
Caring for Muji is a unique and challenging journey. She has a gut disorder that makes digestion and feeding difficult. A GJ tube bypasses her stomach to deliver nutrition directly to her small intestine. This, unfortunately, leads to reflux, vomiting, and discomfort. Muji also has difficulty going to the toilet and experiences a hoarse voice, sleep apnea, and noisy breathing.
Communication and Sensory Challenges
Muji communicates in her own special way. Though she cannot speak verbally, she uses a communication devise and expresses herself through hitting the switch with her head, lip movements, and eye contact. She also faces sensory processing challenges, including cortical hearing impairment and cortical blindness. These make it difficult for her to respond to her environment, even with hearing aids.
Epilepsy and Uncontrolled Movements
Muji also lives with epilepsy, which causes seizures and uncontrolled muscle contractions. During these episodes, she may appear to be daydreaming, but her muscles twitch, and she often bites her tongue and mouth.
A Miracle in My Life
Despite these challenges, Muji is a miracle to me. She has taught me the true meaning of unconditional love and transformed my life in countless ways. She is a constant source of joy and inspiration, reminding me of the real happiness that awaits us in Jannah. I cherish every moment with her and look forward to the day when she is free from her physical limitations.
Thank You
Thank you for taking the time to learn about Muji's story. I hope it inspires you and reminds you of the strength and resilience of the human spirit. If you'd like to stay updated on our journey, please subscribe to the blog. I'd also love to hear your thoughts and comments.
Stay blessed,
Muji's mum/Nur
lightnur17@gmail.com
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