Giovanni's World!

 Actions speak louder than words: Ghana elections, why I chose not to vote, policies on disability... Ghana is currently having its presidential and parliamentary elections, several people took the opportunity to go to their various polling stations and vote. I think my whole family also went out to vote. While people were voting on 7th December, I decided to go have a look whether my name was even in the register and unfortunately it wasn't there. Now I was a little melancholic about the fact that it wasn't there but then again if it was there, who would I have voted for?  Truth be told, my mind wasn't 100%  made up about who to vote for because for the past two decades of my life I had been disappointed, and since my son was born even more disappointed with government; why because they simply do not care about the people. Each government comes in for their own selfish gains. From the few manifestantes I had access to no political party really covered realistic,...

Societal attitudes and hospital life... We have been in and out of hospital since 8th September. Poor Giovanni has been sick for a whole month and we've been admitted, discharged and readmitted. Poor baby. Almost every 2 weeks we are on admission at 37 hospital. 37 dun kill us ooh! Hmm so here we are again being detained at 37 (detained LOL that's what they call it). Today I just wanted to break down and cry. I get here with the nanny and head straight to pediatric emergency unit. We see the doctors and I'm asked to go look for my folder. The lady I spoke to was so damn slow in looking for the folder, like nothing was at stake (she is probably used to people rushing in shouting for folders during emergencies) she looked tired and unbothered. I had to bite my tongue and just cooperate. So to my dismay and extremely patient face she tells me she can't find our file in the system and starts asking when I first brought Giovanni to the hospital etc.😩Lord help me not ...

Me and my boo at Nkrumah Ward 37 Hospital Yup, it really was a storm in a tea cup 8th September. With the birdge in East Legon being closed due to Ghana Water Company doing some works there. Hot afternoon, I took the day off in search of a new nanny since nanny number 4 finally gave up and left (I'm even happy she did). Came home and the little man was just not feeling great, had to rush him to 37 hospital in the traffic! That day, the traffic was exceptional because the tunnel was closed. Those in Ghana will remember it well, the whole of Accra was at a hault and people were stuck in traffic for a minimu of three hours.  Hmm anyway and so we 'rushed' to the hospital and for some crazy inexplicable reason, people decided to block us hmm: the people that blocked me that day as we beeped through the traffic, I've prayed for them and forgiven them for their selfish ways.  So, we've been falling sick, been admitted twice to 37 Hospital in two weeks and been sick...

I'm singing a redemption song so that my Father in Heaven will have mercy on Giovanni. It's hard as a parent to make decisions that will affect him forever, and if anything goes wrong I will be responsible. So far no medication has been able to control Giovanni's infantile spasms and so the doctor's have moved onto the next level. That level where the drug is super dangerous yet we have absolutely no choice but to use it? Yup we have finally reached there and it hurts. It hurts that I'm going to give Giovanni medication that may possibly impair his vision after just a few weeks of using it (no I'm not lying I will post the link and you can check it out yourself) however I've been told by doctors it will definitely stop the spasms. Now how do you leave a decision like that in my hands? I wish the world knew the love I have for my son, I would lick the ground for him. And yes these are the exact moments when I ask God why and if I have done something wrong he...

I thought me lying in a public hospital and having surgery was my worst nightmare until Giovanni got very sick and we had to go to 37 Hospital. Giovanni hadn't been feeling well all weekend. In fact I thought he was tired from the party we went to on Saturday. Sunday he was too quiet and not his usual self. Monday he had a serious seizure that lasted a total of 20mins (my poor gio) worried as I was I informed the doctor and gave him his medication. Tuesday afternoon he had another long severe seizure but this time developed a high temperature. No amount of sponging helped. And even the suppository didn't bring the temperature down. Our usual pediatricians funny enough were both outside the country. So we had no choice but to go to a private clinic in East Legon. We saw a doctor at Acacia Clinic (Thanks to an amazing friend Vanessa who helped us get in touch with him), he was very helpful and referred us to 37 hospital. What I'm about to tell you will begin as a marathon b...

So here comes the issue with nannies and nurses for children with special needs. It's a huge headache for us. To find someone who is literate but at the same will play with your child and stimulate his development. And of course I need someone who will show him a lot of love. It's really hard to get a correct nanny these days and this has become a challenge now to mothers in general so how much more a mum who has a special needs child. As I wrote this piece last week I was angry and very hot and bothered. Why does our society believe money grows on trees?  So in my case, Giovanni requires a nurse or at least a caregiver (someone with some healthcare knowledge) to take care of him while I'm at work. I've been dealing with a number of agencies. Having a nanny can cost between 300 and 600 Ghana cedis a month but a nurse/caregiver is much more. My child doesn't run around, yes he would need to be cleaned, fed and played with like all other babies. The only difference ...

1st August, marks the day when a group of amazing friends led by Yaa decided to raise money towards Giovanni's treatment through a walk. We are forever grateful for people like these with such warm and big hearts. It showed me that people really do care when you reach out to them and people want to help. We would be nothing today if it hadn't been for all those people (family friends and others) that came out to support us that day and the money has gone a long way in Giovanni's treatment. Medical treatment for long term illnesses can be expenisive and therapy which helps Giovanni so much can also be super expensive. I came across an announcement today of a training Programme for parents with special needs kids: it's a one day workshop that includes snack, lunch and a certificate for an amount of 250 Ghana Cedis for the day. Now in Ghana, this is expensive for a programme that will only last a few hours and that has more to do with your daily living experien...

When a mother gives birth, the new born baby is a joy to see and it's a blessing to have kids. Having a special needs child I believe is more than a blessing, it's a privilege, they are God sent. Just like everybody else, but even more so, they are here for a purpose and a specific calling: to influence the lives of others, to touch people and in a different way. They are truly, God's jewels. God's special gifts. They tend to be very fragile both emotionally and physically. Which means if they fall sick, it can be very serious. Giovanni has been sick for the passed few weeks. You see it's very different when a special needs child falls sick. They are more fragile and sometimes more prone to infection, this means when Giovanni gets sick, he gets really really sick and trust me it isn't great. I wish people would just wash their hands before touching babies? I mean you've come to visit Giovanni and you're from church, you have shaken a few ha...

At 3 days old, Giovanni was diagnosed with two rare conditions: microcephaly and craniosynostosis after a CT scan. His sutures appeared closed and his head was abnormally small according to the doctors. And so this is where our journey began, of seeing doctor after doctor, specialist after specialist, trying to find exactly what was wrong with my baba. After seeing several doctors in Ghana, who confirmed what the CT scan showed, we raised money and flew to South Africa thinking we were going to do surgery to open up his skull, only to be told by the doctor something different. Something we weren't expecting at all. At 10 weeks old Giovanni had a MRI scan in Cape Town, South Africa and the doctor told us mysteriously that Giovanni did NOT have craniosynostis like we had thought but confirmed it would be more of a neurological problem that couldn't be corrected by surgery. After the trip to Cape Town, we came back to Ghana even more baffled about Giovanni. I knew something...

The sleepless nights you have: because he can't sleep, you also can't sleep. He doesn't eat, you also don't eat. He's frustrated, you're also frustrated. Physically and observing him during the day, there seems to be nothing wrong, but you know he isn't ok. Then you know it's going to be a long night. He's restless and you just cant find the reason why. My child is my daily bread, if he's sad I'm sad, if he eats I eat, if he has no appetite, I have no appetite, if he's happy, I'm happy. A mother's priority is always the well-being of her child.and if he isn't alright, you're not going to sleep for sure. The sleepless nights usually start with seizures. The pain I feel for my child when he has a seizure and there is nothing I can do. He looks into my eyes and you can see he is in pain and he is almost asking 'why is this happening to me' and you can't explain. All you can do is hold him close and shower...

I promised I would share this testimony with everyone I know and hope in some way it will touch your heart to take life more seriously, and be thankful for what we have; so here goes: On Friday February 13th 2015, a year ago today I was rushed 🚑 to Tema General Hospital for an emergency Surgery because I had intestinal obstruction, a ruptured meckel's diverticulum, and perforated intestines. The previous year I was always feeling faint and always thirsty. Little did I know that the passed year of my life, everything I ate was passing through the holes in my intestines and had gradually made my system gangrene. The doctors had wondered how I had survived this whole time. Not to forget I was also about 18wks pregnant. I had a NG tube shoved down my throat through my nose 👃🏽while vomiting throughout the process (they couldn't wait till I was sedated as my condition when I arrived at the hospital was almost passing out). I was told my son wouldn't make it through the surge...

Some days it's hard, and some days it's really hard. It doesn't get easy, anybody that tells you that is liar. Having a special needs child is like having twins, double the work, double the trouble 😊, double the attention, double the care, double the expenses, double the everything. Family may support, friends may support, but at a certain point in the day you are left all alone with your child and you have to deal. The devil is always lurking,oh yeh he's always watching from the background, waiting to see if you'll lose your patience, if you'll cry or give up, God is always there too watching for the same things, but His mission is to help; To encourage you, to console you, to catch your tears. If you think you will be satisfied with support from family and friends, I'm here to burst your bubble, they will support to some extent but they won't always be there and they certainly won't understand what you're going through the way Jesus does...

Right after getting married, I got pregnant almost immediately. In the beginning, I wish we had waited but God knows best and why I fell pregnant so quickly. I was very sick throughout the pregnancy, the usual morning sickness but lots of throwing up, sweating; I was always hungry and couldn't get myself to eat due to the nausea. I became very prayeful in my preganncy, I went to challenge bookshop in Accra and took my time to look for a devotional that would help me go through with it. I prayed a lot but I also visited the doctor a lot and everytime he would see me he would tell me what I was going through was very normal. They don't tell you, but when you're pregnant, you tend to dream a lot... a whole lot. It was actually an eye opener for me because what I would dream about someway somehow related to my present situation in life. One strange dream I had, was when i was praying to God to give me a strong healthy normal and special baby. Now how many times do you ge...