My Journey with Elly, my Cerebral Palsy Warrior

Elly was born on July 13th 2016 and Just like any other parent, i had hopes of raising a normal child. I did have a smooth pregnancy, i was never sick, except for a few days when i climbed Mount Kilimanjaro at 3 months pregnant. All scans showed all was ok, i was consistent with my ante natal appointments and took very good care of myself. It was during birth that Elly’s head got stuck, his brain lacked enough oxygen, he came out blue, did not cry and his head was deformed. He suffered severe birth asphyxia and spent the first week of his life in the intensive care unit, and three days in the newborns unit having phototherapy treatment because he had developed jaundice.

At home Elly was unable to breastfeed, he used to cry uncontrolably, he was hungry and could not suck because he had no suckling reflex. The only option was to introduce him to formular, (spoon feeding) that solved the problem for 7 months.

Three months on, i realised Elly was not growing normally, he had no head control, he never smiled, no eye contact and did not follow sounds. I made several visits to different specialists: peadtricians, neo natologists, neurologists and opticians. I had no idea what my sons condition was till this point, all i had was hope that he was growing slowly but will be fine.

Elly began having epileptic attacks at the age of 4 months, this was actually one of the most painful and saddest moments, watching him scream and twitch nearly 10 times a day. I then visited a neurologist, he did EEG, MRI and Xray on his little brain, prescribed medication and directly reffered us to an occupational therapist. It was the therapist who answered some of my questions in regards to my sons condition, Cerebral palsy.

Denial, anger, hopelessness, grief, confusion were the emotions i experienced. Without any counceling we started therapy immediately, this was new to me, a new mother with not much knowledge of Cerebral palsy. It was emotional watching him cry during the therapy sessions, and this we religiously did three times a week. Depression took over my life, i blamed myself thinking it was all my fault, i blamed the hospital i had delivered at.

The trips to the therapist helped alot, there I met different parents, with the same case as mine, others with more severe cases. It was now 8 months and Elly had outgrown the epileptic attacks, but still, i was in denial.

I am proud of Elly at two years now, everyday is a little progress. At six months old he had his first smile, he can now sit with support and a few minutes without. He loves swimming and being in water, he smiles and enjoys playtime. He is easy with feeding, thus very healthy. My whole life changed because of him, he has taught me the value of patience and to appreciate every little thing in life. I have fully accepted his condition & the parenting responsibilities that come with it and i no longer live in denial. I fully understand the meaning of Cerebral palsy and hope i can walk this journey with other CP parents to share, comfort, fight stigma, create awareness, give hope and above all accept and love our CP kids.

…”Understand, Accept and Love kids with cerebral palsy”…. Rose Angira

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