This blog is about Miraculous MissM my fifth child who is 18 years old. She was diagnosed with Cerebral Palsy because of a severe brain injury during birth caused by placental abruption, where the placenta separates from the wall of the uterus before birth.
MissM has spastic Cerebral Palsy, which makes all her muscles stiff and tight. She is on daily medication and gets Botox injection every 6 months on her arms and upper legs muscles to relax her muscles. She cannot walk because she can’t control her muscles voluntarily and any movement is difficult for her. Both her arms and legs are affected as well as her trunk, face and mouth. She needs a custom-made seat installed to her wheelchair for support to sit up and can’t sit in a normal seat due to support needed to sit upright. She travels in her wheelchair and uses a standing frame for standing. Because she is excessively laying down or seated she often suffers from bedsores making her uncomfortable and in pain.
MissM
is very challenging to care for because she doesn't eat, sleep and grow like typical children. She has a condition where her gut does not work properly at moving its contents through her digestive system. Due to brain injury, her intestinal muscles have lost the ability to coordinate muscular activities. She is fed through a GJ tube that was inserted through her stomach into her small intestine because she is unable to take food orally. Her weak stomach makes her unable to process the food in her stomach, so the tube bypass her stamoch. This a condition in which food and gastric acid frequently flow back out of the stomach into the oesophagus and mouth called reflux. As a result she is suffering daily vomiting, constant and sudden crying and 'colic' pain. She is losing calories and doesn’t put on weight. She is having difficulty going to the toilet, a painful and swallow stomach. Due to gut disorder, she also has a hoarse voice, sleep apnea, noisy and laboured breathing.
is very challenging to care for because she doesn't eat, sleep and grow like typical children. She has a condition where her gut does not work properly at moving its contents through her digestive system. Due to brain injury, her intestinal muscles have lost the ability to coordinate muscular activities. She is fed through a GJ tube that was inserted through her stomach into her small intestine because she is unable to take food orally. Her weak stomach makes her unable to process the food in her stomach, so the tube bypass her stamoch. This a condition in which food and gastric acid frequently flow back out of the stomach into the oesophagus and mouth called reflux. As a result she is suffering daily vomiting, constant and sudden crying and 'colic' pain. She is losing calories and doesn’t put on weight. She is having difficulty going to the toilet, a painful and swallow stomach. Due to gut disorder, she also has a hoarse voice, sleep apnea, noisy and laboured breathing.
Even though she cannot say any words verbally she uses a unique language and communication book for her complex communication needs. She shakes her head to the side to say no and sometimes looks at you or moves her lips but rarely nods her head to say yes.
MissM has sensory processing challenge. She has cortical hearing impairment caused by damage to the primary auditory cortex. Although she uses hearing aids, it is hard for her to respond because of her physical difficulties. She also has cortical blindness because the visual cortex of the brain is not functional due to the brain damage. She appears like she trapped is in her own body.
MissM has epilepsy with uncontrollable contractions of muscles. When she has it she appears to be daydreaming, her eyes are blinking rhythmically and her muscles are twitching. She also has unusual, repetitive, uncontrolled movements, such as chewing movements of the lips, crunching teeth and turning of the head. Usually, it bleeds her tongue and mouth because she bites them.
I treasure the opportunity to care for my daughter and she purely taught me, unconditional love. With a mercy of Allah, she is a miracle for me. She transformed my life into a world filled with wonder and surprise. She is a real blessing to my family and me and reminds me so much of real happiness in Jannah. I look forward to the day when she is waiting for me by the gate of Jannah and come to me walking and calling me mummy.
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Until next time, may Allah bless you.
Stay blessed,
You can contact me by email, at lightnur17@gmail.com