A Kenyan Mom’s perspective of Raising her Son with Cerebral Palsy.
“My name is Rose A. Angira from Kenya, a mother of a little boy Elly with cerebral palsy.
Elly was born on 13th July 2016 and just like any other parent I expected to take home a bouncing baby boy, but things turned in another way.
I am one of the lucky mothers who had a very smooth pregnancy, except for a few days when I climbed Mount Kilimanjaro (Africa’s highest mountain) while 3 months pregnant. I was active all through the nine months.
Elly suffered severe brain damage during birth, his head got stuck, he did not cry, and was blue. He spent the first week of his life in the intensive care unit undergoing oxygen therapy, and 3 days in the newborns unit for phototherapy because he had developed jaundice.
At home Elly cried uncontrollably and could not breastfeed, I later learned he had no suckling reflex.
For 7 months he grew up on baby formula by spoon-feeding. From his birth, I felt something was not right, the hospital only told me he had breathing problems and that is why he was undergoing oxygen therapy, nobody told me about brain damage. At 4 months old Elly had not smiled, he had no eye contact or head control and had epileptic attacks.
My journey to several specialists began: to the optician because I thought he was blind, to the pediatricians, neonatologists, and neurologist for his epileptic attacks. One of the pediatricians then advised me to see an occupational therapist, I had no idea who that was but went. It was the therapist that broke the painful news to me, that my son had a condition called cerebral palsy, we had a long talk and he even told me what to expect.
Rose and Elly
Denial, grief, hatred, anger, hopelessness were the emotions I experienced.
I blamed and cursed everybody including God for giving me a child with a disability, I lost hope in everything.
I had dreams for my unborn child, I even had an idea of how I was going to raise him. When the diagnosis happened it was a big hit, many at times I locked myself in the house with my son, I cried and then my hatred towards people grew bigger. I hated seeing my friends posting their kids and celebrating their milestones. I could not get the courage to talk to anyone, I hid my son from many people. Every time I looked at my son especially during the epileptic attacks, the pain of watching him suffer made me go down on my knees and asked God to take him, I prayed for him to go and rest instead of suffering. When it was too much I had suicidal thoughts, I thought I would find peace in death, with my son, I nearly did it.
The stigma made it worse.
I once heard some two women discuss behind me that I might have had a wrong diagnosis from the witchdoctor that affected my son, to some I used my son for rituals, a pastor once asked me to go to church and confess my sins so that my son could be healed. All these things, the thought of how the society viewed disability made me more depressed in addition to denial. Friends and family kept asking why Elly had not achieved this or that, others even blamed me, I would smile on the outside and act normal, but at home, I would break down.
We had therapy sessions 3 times a week, there I met many parents whose kids were even older than mine. I was curious to know more about this condition and the stories of how other parents managed. When my son turned two years old I finally reached my Acceptance destination and even went public about it. If there is one thing I am grateful for, it's moving from denial to acceptance.
Rose and Elly
Children's disability in Kenya is still perceived as a curse or sins of the parents.
This inspired me to want to create more awareness to help the general public understand. My son inspired me to want to help other parents who were still living in denial, and to help them understand and accept their kids. how I went public and even started a personal blog to write about Elly’s journey and special needs parenting. As Elly turns 4 on 13th July, he still has not achieved much, his head still lags, still sits with support, no eye contact, cannot track, cannot bring anything to his mouth, (cannot use his hands). In short, he is fully depending on me or others, Elly can absolutely do nothing for himself, we feed, bath, move him around, scratch him, etc and I know the journey will get tougher as he grows and I have fully accepted his condition and the parenting responsibilities that will come with it, I love my son and I am raising him exactly the same way I would have raised him if he didn’t have CP, I refuse to deny him his childhood and this is something I encourage most special needs parents to do."