BROKEN BUT BEAUTIFUL

If Love Has A Name

For weeks now, I have been trying to pen down my thoughts , struggling to encourage someone with my story of how I triumphed in the face of the many life's challenges thrown at me.

But, the more I tried to write, the more I lost focus and everything became vague and distant like I was living in someone else's body and telling their own experiences, it just didn't sound like me.

So brethren in the ministry, I did what any sane person who has walked in my shoes would do; I applied myself to other ventures after all, like my Ajegunle people would say "at all, at all na winch".

And because there was no motivation to write anymore, I dusted myself, packed up my gear and and told this series bye-bye, at least the world now knows my story and I was doing everything within my power to change the narrative for every person living with the rare genetic disorder called ECTODERMAL DYSPLASIA across Africa, I have tried na, abi?

That was my exact mindset, before I had an encounter a couple of days ago, that jolted me and made me realize I wasn't done, at least not by a long shot!.

Honestly, how do you stop telling a story when you are living with the reality of it every single day of your life?

How do you stop sharing your thoughts, experiences , fears and little triumphs when you have kids who are looking up to you to be their voice and are drawing from your strength because they think you are wonder woman and there's nothing you can't do?

How do you break their young hearts, when they ask you questions like 'Mum, why did you stop telling your online friends about us, I thought you said they loved us and many people are now aware of Ectodermal Dysplasia because of us'?

#sighs

Believe me when I tell you that this has been the hardest thing I have ever had to do in my life. If you know me very well you'd understand why.

I am strong (at least to the rest of the world), resilient and I can keep secrets to a fault,it's so bad that I would rather die than tell you I'm offhungry or broke; so, you can imagine how hard it is for me to lay everything bare and tell the world my best kept secret (my childrens' condition).

But what choice do I have?

Really!, would I rather keep quiet and watch them being constantly humiliated and shamed by peers and society because of an anomaly in their genes, something they have no control over?

Should I have kept quiet because I didn't want my friends and family to think I brought disgrace to them, if talking was the only way I could create awareness for the condition and also kept myself from going insane from the trauma of my experience?

Well, I'll leave that to you to judge.

On a beautiful Saturday morning in July of this year, just a few days after my birthday; I called for a brief meeting in our sitting room, i recalled three pairs of eyes staring back at me in confusion, hubby was looking at me askance like 'haba babe, but we were together all this while and there was no mention of any meeting nau?'

Shawn and Alvin kept exchanging curious glances at each other as they grudgingly dropped the TV remote and I'm sure the question on their young impressionable minds was ' this our Mummy has come again, what's she going to say now?' Lol.

But they all knew what I wanted to say must be something crucial, so they waited in anticipation.

As I cleared my voice to tell them why I had to interrupt their Saturday routine without prior notice, I heard a distant voice say to me categorically 'Idara, just take a good look at these kids, don't you think they have been through a lot already? Chase your clout on social media on your own watch and leave them out of it, after all, it's been ten years already, what the world don't know won't hurt anyone.

I felt this unexplained dryness in my mouth, I swallowed hard and for a brief moment I lost my composure, I just couldn't go on with the proposed meeting anymore but as I opened mouth to tell them that it was all a big mistake and that they should go back to whatever they were doing before I came with my 'wahala' , I saw my first son (Shawn) looking at me intently and recalled what he told us a few short months prior of how his class teacher harassed him in front of his classmates and asked them to boo him because he took his bath incessantly during class hours before he just couldn't concentrate when the weather is hot and how that episode subsequently took a blow on his self esteem.

I remembered his heartbreaking questions at the time: 'mummy, am I really ugly?' 'why don't I sweat like other people?', why do my friends call us vampires when we say we don't have teeth and laugh at us when we take our baths frequently because we are always hot?'

At that instant, I saw my children's everyday reality and I told myself there and there and then was no hiding from this anymore , we just had to do this.

What do I care that ignorant people might call it clout chasing or whatever new slangs, the internet might concoct in future but at least the world would know people like Shawn and Alvin existed in the world and they were in Nigeria too.

I pushed aside my initial fear and misgivings and asked my little clan what they thought about my crazy decision to tell our story to the rest of the world.

Hubby was the first to support me , I didn't doubt that he would because you see ehn, that man supports me through every and anything! And believe me, no be kop nomi (African jazz) na just unmerited favour. Lol

But on the other hand, my kids were the hardest to convince, when I was done with the deliberations,telling the pros and cons of this move and the fact that their quiet lives might not be the same ever again, they took permission and went on to have their two aside.

That's how my boys are.

When they came back from their meeting, Shawn was nominated to speak for the gang.

They raised their concerns, and asked me questions like; 'will people on the internet insult us too; are your online friends as nice as you portray them and will they help us?' I guess my responses were convincing enough because I got a 'Mummy is okay, tell our story to the world' in the end.

I don't know how I survived the excitement that day , because everyone knows that if Shawn and Alvin ever gave you an affirmative reply in unison without one person objecting to it. You have made it in Life!!

LoL

When Shawn had his routine memory lapse for a scary third time in a space of five minutes this evening, I got panicky.

I tried everything in the book to help him regain his memory but every remedy in the book failed me.

He would come to and in a few short seconds blank out again.

I would call out to him, he would respond but before you knew it my son was not in the room with me, his eyelids were blank and he was staring into space.

I lost it, I could hear my husband in the background asking me to calm down that he'd be okay, after all this wasn't his first or second episode, but I was hearing none of it.

You see, this wasn't the first or fiftieth time , he has had these episodes, he forgets himself at any given opportunity , it happens in school, playground, when he's taking his bath , anywhere at all.

He blanks out and doesn't even remember the last conversation he had and as a mother it's the hardest place to be, watching your child suffer and apologizing everytime for something he has no control over.

We have tried to find out from his doctors why he keeps having these episodes, and all we get is that the frequent convulsions he had as a baby and the excessive heat he emits due to his condition (Ectodermal Dyplasia) is to blame.

He's undergoing therapy and hopefully one day , we'll put this behind us but that's not why I am telling you this story.

It was something significant that happened just about the time I was going berserk.

I felt a small hand touch me from behind and when I turned,

it was Alvin.

He wasn't in the room initially and because of the commotion I didn't notice when he entered.

He's not a child of many words, he just signalled me to stop yelling by putting his finger over his mouth, walked over to his elder brother....hugged him tight and started praying for him.

He held him like that , till Shawn came to and Alvin held him by the hand and took him to their room.

I have never seen anything like that in my life, it was so surreal , it left me transfixed!!

There and then , I knew I was blessed beyond words, ectodermal dyplasia has nothing on the bond these two share and together they can achieve anything!

In short , I have stopped jumping around like a crazy person, for asking. LOL. I went back to making dinner with a big smile on my face amidst the tears.

ALAS, ALL IS WELL IN UDOHVILLE AGAIN.