‘When you walk in the streets with a child with cerebral palsy, people stare at you like a devil’Heart broken mother narrates her journey with cerebral palsy

Raising a child with cerebral palsy is not an easy task but is even more hard on  mother when their child ails for months without really knowing what is wrong with them.

Cerebral palsy (CP) is the term used for a group of nonprogressive disorders of movement and posture caused by abnormal development of, or damage to, motor control centers of the brain. CP is caused by events before, during, or after birth.

Rose Atieno a mother of a two-year old boy narrates her challenges bringing up a child with disability  and the stigma she and her child face.

“In Kenya, raising a child with cerebral palsy will either force one to be sacked or quit their career to take care of the child. No house help is ready to stay with a child perceived to be cursed,”

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According to the World Health Organisation, every time 1,000 children are born in Third World countries, including Kenya, four are found to be with cerebral palsy.

The full-time care the children needs means that mothers have to quit their jobs and take care of such special children.

Atieno, a single mother, now stays with her little boy, who can’t feed himself, let alone walk or touch an object properly, because he was born with cerebral palsy, an incurable condition that is thought to be caused by brain damage before, during or soon after birth.

Before her son was born, Atieno was working with Tours and Safari, a travel company at Ukunda, and earning at least Sh45,000.

She says

“My life crumbled down after the birth of my son. It took me four months after delivery before I found out that my hopeless child, who had taken dozen of drugs not knowing what he was suffering from, had cerebral palsy.”

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At first, Atieno realised that something was wrong with her child as he wasn’t moving or following the sight of objects.

She says that she sought help her son in vain

“I went to different specialists in Coast but all was in vain, up to four months on, then a certain peadiatrician recommended me to a facility where my son would start exercising. At the facility, I was taught more on cerebral palsy.”

https://instagram.fmba1-1.fna.fbcdn.net/vp/17dc5409f153ec1c9d56c34f623cdb60/5C28D3AF/t51.2885-15/e35/39629843_472932826555881_1640296526292975616_n.jpg?_nc_eui2=AeGhasGfJvChnWsrCdbCM5_XvktoRaHHWG62WvOSlMNpkRAsWTRIMZ7aubl5tnj81ftzfGpBzIilNSawiJ_zhyW-ZPnOTXGljeTSvllqfU5-fA
Children affected by cerebral palsy under going therapy

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Atieno thought she had done something wrong, blamed the doctors too who helped her on delivery but at last, she found hope after meeting fellow parents whose children were in a worse state than her son.

“I was hopeless, in denial, angry and had a lot of confusion. I was going for exercises three times a week so that at least my child could be able to move his right hand which looked like it was paralysed.”

In Coast region, any disability has been taken as a curse, witchcraft or sins a parent committed.To Atieno, the experience is familiar.

“There was a time my child went to the church with a friend and the pastor asked that I also go and repent my sins. When you walk in the streets with such a child, people stare at you like a devil.”

 

Courtesy:The Star

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Mother’s Moving And Inspiring Message To Her Daughter Living With Cerebral Palsy

Suzy Njeri is one of the proudest mothers around. She is never afraid of showing off her daughter who’s living with cerebral palsy.

Just recently, Njeri left many showering her with praises after she shared the story of her daughter who was diagnosed with the condition at 6-months-old. Her story went viral and has inspired parents with children living with cerebral palsy to accept and treat them just like other normal children.

“I WILL NEVER FORGET THE LOOK THE DOCTOR GAVE ME WHEN HE SAT NEXT TO ME IN THAT HOSPITAL ROOM SEVEN YEARS AGO, TO TELL ME MY 6-MONTHS-OLD DAUGHTER HAD CEREBRAL PALSY AND I SHOULDN’T SPEND SO MUCH MONEY ON NEUROLOGIST’S APPOINTMENT RATHER SPEND ON THERAPY. HIS EYES LOOKED STRAIGHT AT ME, STRIKING LIKE A SWORD THROUGH MY HEART. ALL I WANTED IS HOPE THAT THIS IS GONNA BE OVER SOON!!

 

BACK THEN, NOT KNOWING BETTER, I REMEMBER FEELING DESPAIR, ANXIETY AND MOSTLY HOPELESSNESS. HOPELESSNESS FOR WHAT I IMAGINED MY DAUGHTER’S LIFE WOULD BE LIKE. HOPELESSNESS FOR WHAT I IMAGINED THE DIAGNOSIS MEANT FOR ME AS A PARENT. HOPELESSNESS FOR HOW DIFFERENT I THOUGHT MY FAMILY WOULD LOOK AT THE ONE I HAD IMAGINED. I HAD A MOMENT OF EMOTIONAL MELTDOWN!

 

I WAS CHANGED IN AN INSTANT AND FOREVER BY THAT DOCTOR’S LOOK. I TRULY FELT I WOULD NEVER LAUGH AGAIN! BUT NOW, LOOKING BACK AT THAT MOMENT, I HAVE REPLACED THAT ANXIETY, SORROW AND FEAR WITH DIFFERENT EMOTIONS: HOPEFUL ONES”.

The proud mother has for the first time penned down a letter to her daughter and here is what she wrote;

“(Every parent to a child with Cerebral Palsy has some FEAR over what awaits their children. I hereby address our children, just like their mother)

A letter to my daughter

The day we found out about your special needs, your diagnosis of cerebral palsy, I was never worried for myself. I already knew I loved you with all my heart. I already knew I would do whatever it took to take care of you. I already knew I would be willing to sacrifice anything for your well-being and happiness. I knew I wouldn’t trade you for the world because you are my world. My days were filled with doctors appointments, therapists offices and lots of waiting rooms, but they didn’t bother me. I love helping you, and watching you learn and grow.

I know I’m not super mom, but I try my best to you. You have such a sweet heart. Seeing your joy and love for people inspires me. Your heart of gold makes me want to be a better person. I would do anything to keep you this way — young and innocent. I’ll fight for you ever day and will go to the ends of the earth to keep you safe. Yet, I know no matter how hard I fight or how much I try, my biggest fear for you will one day come true. I can’t stop it. I can’t change it. I just have to sit and wait for it.

Because what I FEAR the most is the DAY YOU WILL UNDERSTAND.

That day you see how different your life is.

When you learn that all these appointments aren’t just fun new play places. When you start to notice the stares of strangers and understand the comments they make. The day you wonder why you can’t run as fast as your friends. When the other kids want to know why you are so different. When someone tells you that you can’t or underestimates your strength. The day that you get called slow. When you’re so frustrated because you put out so much effort, as much as you truly have, and you still can’t do what you want. I know this day will come. I dread the day already.

How badly I wish I could keep you here. In the place where your smile never fades. The place where you feel strong and safe. I know the world is harsh, and I know it will all be a little harsher for you. I know I will never be able to change it. I can’t change the fact that one day that fearful day will be upon us.

The truth is, that day will come, but it will also go. That day I dread for you, my sweet baby, isn’t one that will last forever. It will pass, and a new day will come. Even though the battle will have just started on that day, I know you will make it though. Day by day, you will make it through.

Because I’ll be here waiting.

I’ll be here waiting to build you up and to remind you of how truly special you are. I’ll be here with arms open wide to hold you if you want to cry. I’ll be here to remind you that you believe God doesn’t make mistakes. I’ll be here waiting, waiting for that day.”

Kenyan mother whose daughter has cerebral palsy shares details of her emotional meltdown after diagnosis

Cerebral Palsy is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people. Often, symptoms include poor coordination, stiff muscles, weak muscles,  seizures, tremors and problems with thinking or reasoning. There may be problems with sensation, vision, hearing, swallowing, and speaking. Often babies with cerebral palsy do not roll over, sit, crawl, or walk as early as other children of their age.

There are so many children around the world suffering from cerebral palsy (CP) and several organisations are working hard to help these young souls through charity works, marathons and even fundraising just to see these young ambitious future leaders live a better life.

Unlike the past where children suffering from cerebral palsy were seen as outcasts in the society and were thrown into the forests and left for dead or their mothers chased away from the community, nowadays things have changed. Many have been able to learn about the condition and there are millions of children being taken care of by their parents. they are not discriminated against.

Well, another Kenyan parent, Suzy Njeri who has a daughter living with Cerebral Palsy has come out to share her story after her child was diagnosed with the condition at six-months old.

Here is her touching story;

“HOPE AMIDST ALL MELTDOWN ON CEREBRAL PALSY DIAGNOSIS!!

I will never forget the look the doctor gave me when he sat next to me in that hospital room seven years ago, to tell me my 6-months-old daughter had Cerebral Palsy and I shouldn’t spend so much money on neurologist’s appointment rather spend on therapy. His eyes looked straight at me, striking like a sword through my heart. All I wanted is hope that this gonna be over soon!! Continue reading “Kenyan mother whose daughter has cerebral palsy shares details of her emotional meltdown after diagnosis”