BROKEN BUT BEAUTIFUL

Son, know Thyself.

Then it was time for them to start school and the nightmare began all over again.

We had to start scouting for schools that had air-conditioning, so that they could keep cool all the time just like the consultant recommended at the hospital.

We went from end of Lagos to the next but once we heard the fees for those Ivy league schools nobody told us to run away. #LOL.

In many cases, once we mentioned their condition, some of the schools told us outrightly they weren't equipped for children with such peculiar needs and they politely asked us to leave.

One of the proprietors of one of the schools even went as far as opening Shawn's mouth and you could see the horror on her face when she confirmed that he truly had no teeth at four years.

And because of this, the boys missed a whole session.

I started thinking up a plan B and I had to do it fast if they were to meet up with their mates, I got a home teacher and kept the school hunt on. In the end we opted for schools that had very good windows and the ventilation system was dope , at least that was what my civil servant salary could afford.

But that was not enough, the boys were used to taking their baths at regular intervals because of the excessive heat and the school couldn't afford it , so I started paying them extra to buy bags of sachet water so that that can at least pour it on their heads to keep the heat at bay.

Their school bags became another water storage system of sort, we had it stacked with bottles of water.

This was because they drink more water than an average person because it helps regulate the heat from inside, the only downside was that urinated more because they don't have sweat pores.

They also understood their body system early on in life I honestly don't know how they do it because no one taught them but once they are hot , they take excuse from the teachers and go outside to pour water on themselves.

I remembered an instance where a teacher in their old school told Shawn that he pours too much water on himself for a child hence she forbade him from doing it again despite his complaint that he was hot, I'm sure she still regrets that action till date because he collapsed and went into some form of seizure in a matter of minutes.

Again, if you see their school uniforms wet, please don't be alarmed, they are just trying to survive, they always stay wet so that they'll be cool.

It's not a very comfortable way to live I must admit, some days I put myself in their shoes and boy! I don't wish that life for even the worst person on earth but this is their reality everyday and worse off, there's no cure.

Going out with the boys on sunny days was torture and I always dreaded being caught up in Lagos traffic.

I recalled a particular incident when Shawn was about ten or eleven months when a colleague of mine had a baby and we were invited for the christening on Lagos Island.

I was excited at the prospect of hanging out with friends away from the office for a change and was really looking forward to attending the event.

That was why on the said date, I dressed my son to kill and I couldn't wait to show him off at the party.

By the time, we got to Ọgba bus stop (where we were living at the time), I noticed he was hot , so I quickly opted for a bottle of cold water and a small face towel and dabbed him, thankfully, he was okay, I heaved a sigh of relief and we waited for the bus to fill up.

As soon as the bus took off, there was a slight traffic around Alausa and the baby started squirming out of discomfort and the heat.

I performed our usual ritual but he wasn't letting up, so I begged the guy who was sitting close to the window to let us take his seat, explaining to him of course that my baby wasn't feeling too well.

The fine gentleman gladly relinquished his seat and even helped make us comfortable.

But my Shawn wasn't having any of it , he started screaming the roof of the bus down so much so that I was afraid his little lungs was going to rupture from all that shouting but could you blame him...the child was hot!

When the other passengers in the bus couldn't stand the wailing anymore, they told me to breastfeed him, maybe he was hungry (trust me a crying child in a sardine packed danfo bus on a hot sunny Saturday afternoon is not a sight you want to behold) but how do I explain to these kind people that that was the least of our problems? #sighs

I was embarrassed, confused and distraught.

In that chaos, I spanked him and the child turned a code blue!

You needed to see the pandemonium in the bus, everyone went into a panic, the driver had to make an emergency stop and all the windows were flung open.

The whole time I was incoherent, just blabbing away like a lunatic and nobody could make me stop.

Fortunately for us, a Muslim cleric took charge of the situation, he forcefully took the child from me and started praying.

I don't know whether it was the prayers or the fresh air but after some minutes , the colour returned to his face and he was revived.

I know you are wondering if we still made it down to the party abi?#LOL

Of course we did but it was just to to fulfill all righteousness, the initial plan of painting the place all colours of the rainbow was jettisoned with all alacrity.

I know this might sound stranger than fiction but that's how it's always been on outing days in my home, we always enter into a panic mode if it's a sunny day, but recently we have devised a means to help us make it through the harsh weather days - it's either we leave home before the sun comes up and stay at the venue till the sun goes down or we don't go at all.

When I started reading about Ectodermal Dysplasia, trying to understand the condition and how to help my child after we left the consultant's office about ten years ago, nothing prepared me for the horror I would find.

I was shocked to my core at the different stages of this condition, I just couldn't believe that anyone on Earth had to suffer that much just because they were associated to anyone else by genes.

My heart was torn to pieces as I kept digging for information, realizing this would be my son's reality and there was nothing I could do to help him.

As I kept reading , I found out that depending on which gene a child inherited from the parent he was likely to have abnormal nails, abnormal or fewer teeth than normal, large forehead, sparely hair and no sweat pores among other terrifying symptoms.

Oh! How I cried.

It was really painful to know that this is going to be my reality and I just wasn't ready for it.

I won't bore you with the ache, despair, pain and overwhelming self loathe, I had to live through every day after I got the news of what I was up against.

Alas, I resigned myself to taking each day at a time.

When Alvin came into the picture, I was already living in denial so it was easy to soak it up and pretend it was one of life's lemons.

The reality of my situation started setting in when it was time for the boys to have teeth like other kids their age and it didn't come.

I waited till Shawn was almost five years before I saw one tooth that stood out awkwardly.

I think Alvin's teeth took longer, he didn't have teeth till he was almost seven years old and it's just two molars.

During the period, I became their teeth and till date you'll still hear stuff like ; 'mummy, please chew the meat for me or 'i don't want , I don't have teeth' in my home. #LOL.

I started chewing the meat, fish , any tough meal just to aid them to swallow it.

Imagine having two children between ages nine plus and eight and you are scared to cook meat or any livestock because it's your job to do the chewing.

But if I don't do it...who will?