Randomness

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 was wrong but I just coundn't put my finger to it.  At 6 months Giovanni was oficially diagnosed with spastic quadriplegic cerebral palsy, microcephaly and other conditions.

I started this blog because I want people to know about my son's conditions (microcephaly, cerebral palsy, epilepsy, west syndrome, etc.), I want to raise awareness by letting people into our daily lives and and I want people to have faith in the Lord when they feel they have been left for dead (not in the literal sense please lol). I probably should have started the blog with this very post, ahaha. It also serves as a stress reliever, believe me, I do get stressed regardless of my positive attitude towards life and that of my son's life. People tend to hide their children's conditions but I don't believe in that, I want to break that barrier and increase awareness. 

Anyway and so it begins, I have a beautiful son. I shower him with kisses as much as I can. How he loves to be cuddled and kissed. Makes him feel secure and most of all loved. When my son feels secure his spasms stop, when he feels loved he overcomes his fears. Just like any other 11 month old baby, my son is beginning to understand what we say around him. He understands no and sometimes throws a fit. Lol. He calls out to you when you're too busy on your phone and don't give him attention. And he understands when doctors show their disapproval as to why he was born in the first place. Yes, I've encountered doctors that feel the pregnancy should have been terminated to prevent my suffering and my son's suffering I guess. Giovanni hears it and he understands. Sometimes I want to push my fingers in his ears or filter the information. But hey, that is life, not everything you hear will be nice and you hve to choose to listen or block it out. I choose the latter most of the time :-).

When you have a child you sometimes let your appearance go, when you have a special needs child it's even worse, nothing else matters but your child. Appearance becomes the least of your worries. Giovanni has been sick on and off for the passed few weeks and so my hair is a mess, my eyebrows look terrible and indeed I don't look groomed 😂😂. How do I even think of these things when my child randomly falls sick almost every week? Where is the time to do my hair, put my feet up, relax, have a drink. It all sounds surreal. But yeh when you don't get to do these things, you genuinely appreciate the time you used to have for them. As I write this, I'm braiding my hair but I'm itching to go home and see him. My mother watches him when I'm not around but it's hard especially with the medications he has to take. They are so dangerous that I can't have any random nanny give it to him. It's also very difficult to leave him with anyone. Apart from not being so trusting, I am truly the only one that understands him. He communicates with me and I know whether he's upset, hungry, gassy, or just wants to sleep. Funny but not many people understand Giovanni's body language and this is a problem when leaving him for some hours. I could also call someone to come braid my hair but that means it will take half of my day, as it will only be one person doing it.

Apart from not getting time for my physical appearance, I don't get time for social life; going out to meet with friends is a chore and the thought of leaving Giovanni even for a couple of hours hurts. Especially evening outings but people don't seem to get. Friends try and make plans with me but don't realise to get someone to babysit is sometimes stressful especially someone to babysit in the evenings. I know my son better than anyone else so leaving him alone can be difficult. He has a different way of expressing himself and because I read a lot on his conditions, I tend to understand him way more than others. Like I said already, it's hard to leave my schmukums.

Since I was pregnant up until now, every week I receive an email from one of them baby websites reminding me about the milestones each week the baby should be crossing by now.  Little did I know I won't be need those emails. At first when I read them, I would be disheartened and ask God why. Then when I read the bottom of the link they will always tell you that this is the average and not what necessarily every baby should be doing but it's just a measuring stick. This sometimes relieved me but then again it was painful and discouraging reading these things. I stopped paying so much attention to milestones and have accepted that Giovanni will make progress in his own time and as God wants. And when he makes that progress it would be awesome.

I know my son has so many capabilities because he is strong. He has a lion's heart, brave and strong. He's a real fighter and I know he will overcome many obstacles in life because that is just how it is. God has promised exactly this for his children including Giovanni. He shall overcome. :-)