“My name is Rose Atieno Angira, am a mother to a 3 year old 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 while 3 months pregnant. I was active all through the nine months.
Elly suffered 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 learnt he had no suckling reflex. For 7 months he grew up on baby formula by spoon feeding.
From his time of birth I felt something was not right, the hospital only told me he had breathing problem and that is why he was undergoing oxygen therapy, nobody told me about brain damage. At 4 months old Elly had not smiled, no eye contact, no head control, and had epileptic attacks. My journey to several specialists began, to the optician because I thought he was blind, to the pediatricians, neo natologists, 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. Denial, grief, hatred, anger, hopelessness were the emotions I experienced, I blamed and cursed everybody including God for giving me a disabled child, 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 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 asking why Elly had not achieved this or that, I would smile on the outside and act normal, but at home I would re-think and 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, I engaged the therapist so much and when my son turned two years old I finally reached my Acceptance destination and even went public about it. If there is one thing am grateful for, its moving from denial to acceptance.
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. Children 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.
In my many visits to specialists, I met Geoffrey, an OT, we both had the interest of working with kids with CP, in July 2018, Geoffrey and I together with other parents founded Cerebral Palsy Ukunda, www.cpukunda.org a community based organization that serves the unique needs of children with CP and other disabilities in Ukunda, South Coast Kenya. So far we have registered up to 50 kids who benefit from our free therapy sessions. Once in a while we sit together as parents and share our stories, our own little support group.
I also have two whatsapp groups for parents of kids with CP, there we are free to talk, grieve, cry and share all our joys and sorrows, it’s also a learning platform and most of us have learnt and are still learning from other parents.
I have a facebook group “special needs parents support group Kenya” that also fellow parents like me share a lot.
As Elly turns 3 in July, he still has not achieved much, still sits with support, no eye contact, cannot track, cannot bring anything to his mouth, in short he is fully depending on me. It’s not easy to find a nanny or a relative to help taking care of him, I therefore had to drop my job and fully concentrate on my son. I know the journey will get tougher as he grows, 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. There is life after diagnosis.”