TWO YEARS !

 

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 love the parents. We eventually made our way to the hospital and immediately we got there, I requested for a nice steaming bowl of tom brown with tinned milk and white bread: how I enjoyed it.

6 months pregnant

Didn't know what was ahead. I was on my phone chatting and laughing with people, and calling Julian in between to get his but on the plane from Takoradi to come and support me push. I called and called, boy does he sleep like a log . He finally got my message and made it for the flight early morning flight. All my laughing and chit chat, my mother just kept saying in Ga, "you keep laughing, when your contractions finally start, you will forget about your phone", I was like yeh yeh. Lol little did I know. From 4am to 10am I was just having cramps, very manageable ones. The doctor decided to up things a notch by inducing me at 10am, I told the nurse I felt like doing the number two and she immediately requested that the doctor be called. I guess the games were about to begin. I was induced and I finally felt the crazy pain but only for 45mins and then 3 heavy pushes, he was out. He was squealing when he came out, I'll never forget his cries that day because he still does it sometimes.

Two days old

What have we been up to? 

 

I haven't posted since March this year simply because we were on admission at 37 Military Hospital for two good weeks and it took some time to recover and get back on track. We spent Easter at the Pediatric Emergency. 

I think this was the longest time we had spent at the hospital and the most trying time. Giovanni fell very ill and was having trouble breathing. But for some weird reason, this time I was much more hopeful and in high spirits. I cried a few times of course, but damn was I hardy (lol-well for the most part of it). A few family members thought we would even loose our baby Gio but I don't know I just knew that wasn't going to happen anytime soon. I refused to have any visitors come see us because I just didn't want anyone crying or being sad around us. I bathed mostly at the hospital (bathroom was clean and maneagable) and I ate the hospital food most of the time because I didn't want to bother anyone either. Some friends and family pulled through on some days, bringing in food for me and diapers for Giovanni and they probably have no idea how grateful I am for these favours. Being in the hospital this time round wasn't necessarily easier but let's just say I psyched myself up. And I was blessed to meet amazing kids on admission along with their parents. Giovanni as usual became very famous, nurses on duty would come say good morning to him.

So after all the delays, Giovanni finally started school yaaay! :) People are wondering what exactly does he do in school. Well, it's an inclusive school which means both regular (and no we don't call them normal kids, then what would you call the kids with special needs? abnormal? no no no- anyway moving on) and  kids with special needs attend. So Giovanni gets to interact with other kids, and then benefit from therapy sessions (physio, occupational and speech). He will even go swimming, yes it's supervised.

Lessons learned from this journey: 

Aunty Joyce practicing for her future babies

It's been two years of bliss, two years of roller coaster rides (hospitals, admissions, IV lines, NG tubes), happy fun times (lessons learned, meeting amazing people, appreciating Giovanni, sharing in his joy), sad moments, heartbreaking moments but most of all it has been life changing moments that I am hundred percent grateful for. His infectious smile, his amazing strength even with all the horrible seizures he has everyday. Giovanni has taught me so much in life: to be patient, to worry less, to give my all to things I'm passionate about and most of all to love unconditionally. What an awesome baby!

I'm on several support groups, both Ghanaian and international ranging from very large to as tiny as four people in one group and they've all been very helpful on our journey. I've learnt a lot from other mothers and fathers. We share our experiences, we brainstorm and always look for better ways to do things.

You can get occasional updates, pictures and videos of life with Giovanni through our instagram page by clicking on this link: Mamadigio. Writing and posting pictures and videos about our life is a channel I use to release stress and to also create awareness on microcephaly, cerebral palsy and epilepsy.

Moving forward:

A doctor has suggested that Giovanni's epilepsy could be drug resistant (refractory epilepsy). I won't be surprised and he still has about 15 seizures a day regardless of the several anti-convulsant medications he's on. Please note this is not the case for every child with epilepsy and in many instances the medications we have tried, work really well for others. I guess it depends on the individual. Giovanni's epilepsy has however progressed from infantile spasms to multiple types of seizures (focal seizures, absence seizures, myoclonic seizures, atonic seizures, full blown tonic clonic seizures). The doctors do not want to diagnose him with Lennox-Gastaut Syndrome but seeing how his seizures cannot be controlled by medications, I'm beginning to lean more towards that explanation. In any case we don't need a diagnosis, but it would be great to know how best we can help Giovanni even though the medications aren't working. His epilepsy worries me more than the cerebral palsy.

As Giovanni grows older I still carry him. Wouldn't you if your child couldn't walk? People are more concerned about my back than I am. lol; The thing is babywearing really helps kids with special needs, they love the body warmth, they feel safe, it's a way of communicating with them. I will keep wearing Giovanni for as long as the Lord gives me the strength to do so.

The stares will be more, the curious eyes will be more, the silent pauses will be longer, the sorries are already never ending, the "it is well" statements flood my inbox, the daily questions of will he ever walk? Does he talk? (Am I God?- yes it's a cheeky answer I have constantly in my head for people that ask me questions like this, I'm no soothesayer or fortuneteller) then what can he do? "Aaaw poor Giovanni!".  But people need to realise that I don't feel sorry for us. When people see me with Giovanni and apologise sometimes I get confused. I know they only mean well, based on that I also explain that this is life and we must make the best out of every situation. 

SOOOOOOO as we celebrate two years we just want to thank everyone for all the amazing support, the prayers, the encouraging words through my inbox very often from people I don't know or have never met before!  We are super grateful to all the doctors, nurses, family and friends that always go out of their way for us especially for Giovanni. You have made life a little easier and a little less worrying for us. :) Thank you!

So I end here by wishing our little hero a Happy birthday! 

Happy Birthday my Angel!