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Showing posts from 2017

When Gifts Come Wrapped Differently

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I don't think I've ever taken the time to discuss the mini challenges we face as a family with a child with cerebral palsy and these things may seem trivial to others but they are actually things we have to put a lot of thought into. The things you probably do not have to think twice about every morning, is a full blown migraine for some of us. So I'm about to share the nitty gritty stuff, the tips may help you understand life with a child with special needs and maybe even push you to be a little proactive: Birthdays This is usually a no brainer for most parents with regular kids, but for us special parents especially in a developing country, organising birthdays can be a huge challenge. In my case, doing a party with loud music and older kids running around is a huge no no. The loud music can cause seizures and make Giovanni very uncomfortable. Bouncy castles won't be beneficial to him but only guests. He basically won't enjoy himself. He however like

Jumping hurdles, falling down, getting back up

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I am part of a group called the Special Mothers Project. It's a support group for parents who have children with cerebral palsy. The name stems from the fact that it started out as only mothers, but gradually the fathers have also come on board. We have a whatsapp group where we have a total of 67 parents that have children with cerebral palsy, we keep increasing in number. Gathering from my experience and the experiences of other parents on this group that I have met and spoken with, these are some of the many challenges that parents of children with cerebral palsy face: Some special mothers at TV3 Station presenting a petition to goverment to pay more attention to children with cerebral palsy and their families Stigma STIgma STIGMA (community and church) I recently shared a story on my facebook wall about a lady who has 4 children with special needs who is struggling financially and emotionally. Her community have decided to ostracise her, called her a witch and b

World Cerebral Palsy Day: Dedication to Special Needs Mamas!

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  On this World Cerebral Palsy Day 6th October, I want to encourage all mothers of children with cerebral palsy to always have hope, think positive and never give-up! To you that they told your child will not live for long, to you that go in and out of hospitals trying to find the right treatment for your child, to you that you're the first to diagnose your child before the doctor even opens his/her mouth 😂, (I'm guilty) to you that when you're bathing, you constantly have to keep the door open and peep in to your child because he/she cannot be left alone so in case he/she has a seizure you can run out of the shower with soap all over your body, to you that always have to explain to people how to hold your child because (s)he is different even if they get offended by it, (who cares?) to you that some days nobody can hold your child because he's just not doing good and you don't want to take that risk of giving him to someone else, to you that have

The Ironic but Bliss Feeling of Zen

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Photo credit to babies by bazal I was just sitting here and recalled some of the negative comments (remarks/excuses/whatever you want to call it) that people have expressed towards me since the beginning of my journey with Giovanni. I'll be honest, I do get a lot of support and positive vibes from people, but I also get several negative vibes and I think people underestimate what we go through, so I wanted to share a few of them with you. Some of you will not see these as hurtful because you probably aren't in our shoes and probably never will be. Weeeeeelll welcome to my world! I must say, I've grown a very thick skin these past few years so I brush the dirt off my shoulders quite well. :) Here goes: From a Doctor, "You should have another child, so you experience motherhood properly and nicely, what you are experiencing right now is not motherhood"   From a Christian and active church member of some church I won't mention, "No wonder she

The Not-so Inclusive Education Policy in Ghana

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Observations on the not-so Inclusive Education Policy in Ghana My son Giovanni doing some exercises When I talk about policy, they are the least read posts on my blog. But It's something I can't avoid. I live in a developing country and many of our policies are a fail because they simply do not bare in mind those who are living and breathing the challenges: The current policy on inclusive education is one example. I do not want to make this article technical and so I have chosen only certain parts of the policy that really bother me. I've put into context an article or two that will give you a brief description of the policy. If you would like further information on it, I suggest you go to Ghana Education Service, Intelectual Disability Unit in Accra. This is not an assessment of the policy but I'm just pin pointing some things I already don't feel comfortable with that came up at conference I attended on cerebral palsy and I would like others to be awar

TWO YEARS !

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  Two years ago on Friday 19th June around 8pm I was planning to go have a drink (Malta Guinness) at Feli bees with a good friend of mine Nasei. Little did I know that someone was on his way... I fell asleep and had to cancel my long awaited Malta Guinness meeting. At 3am I feel wet and I was wondering whether I had peed on myself. So I wake up thinking I've had a weewee dream not knowing my water broke! I walk to my parents' room and announce, "Mummy Giovanni is coming", I will never forget how she shot out of the bed confused and shouting "George eeba ei"- "George, he's coming"  and my dad's reaction, "namon ba?"- "who is coming?". "The baby! the baby! Giovanni is coming!" Meanwhile water was dripping from between my legs I was actually having a good laugh at the confusion. My mum said she was going to bath my dad shouted don't bath take her to the hospital now!! Oh gosh gotta

The Church and Disability (Part 1)

"Dear Giovanni, the world is a cruel cruel place. I don't know how we ended up here. People killing each other, rape, defilement, nannies maltreating children...how did we get here? Our very own leaders my love, they talk anyhow forgetting millions are listening to them and heed to their advice. I was just listening to Melodies FM that is 94.3FM, Pastor Dag Heward-Mills Head Pastor of Lighthouse Chapel International  was preaching about tithing and made reference to the song 'Old ragged cross', the line 'the dearest and best ' and said only the dearest and best will be pastors and not people with hydrocephalus or Down's syndrome and people in the congregation cheered on, laughing. How can you preach such nonsense? This is the type of thing that brings stigma with people with conditions that are no fault of theirs. He referred to people with hydrocephalus as water heads and all they have in their heads is water, how can an educated man that people look up

Suicidal thoughts

1 3th February 2015, I went into the operating room pregnant and with intestinal obstruction, merkels' diverticulum and peritonitis. 13th February I went into the operating room with a feeling that I wouldn't come out alive. I've never told anyone this but while being operated on, I don't know whether I was haluscinating (maybe people dream or halluscinate during surgery) but I dreamt I was in a maze and I was trying to find my way out. I kept running and would get to dead ends and I started calling for help out of frustration, with the walls closing in on me, I squatted and hugged my knees and started to mumble that the Lord should please help me and I didn't want to go. I suddenly woke up and found myself in the recovery room. I suddenly realised that I had survived and my unborn child (Giovanni) at the time also survived. I didn't tell anyone about this dream because I thought it was just craziness and probably hallucination due to the medications. 22nd

From Mumbai with love...

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7th January 2017 Our first day in Mumbai and what a hectic day it has been. India has redenominated its currency and the forex bureau in the hospital has closed. I had to pick a tuktuk (rickshaw taxi) to lokandwala market to change money, I left the hospital at about 6.30pm and stood on the road looking for a tuktuk that would go. Nobody was willing to go. I saw a nice looking young man with his son in pyjamas and no hair on his head, looked like they had just been discharged from the hospital. The gentleman realized how much I was struggling and when he got a taxi he offered me a ride. I was elated. Of course I hopped right in, and he seemed quite safe regarding his situation. As we were in the taxi, I thanked him and smiling I watched him interact with his son. They intrigued me because it's always nice to see father/son bonding and also nice to see a father being actively part of their child's healthcare which isn't very common to see in Ghana. Me: Is he your son