BROKEN BUT BEAUTIFUL

Two Roads, One Destination.

Getting pregnant again at that critical time of my life was one of the hardest decisions I had to make.

I made peace early on to live with the taunts and jeers that came with dragging a pregnancy and carrying another child of six months around.

I didn't just become the butt of the community's joke, I saw people pointing at me and laughing many times as we passed by.

Clinic appointments were even worse. On immunization days, I hid at the back of the room, to avoid being used as a specimen by nurses every time they wanted to advise women on child spacing.

If only they knew. #LOL.

But to be honest, those days weren't easy. Some nights, we didn't sleep, we shuttled between dabbing Shawn constantly with a wet cloth to keep his temperature stable to making sure I coped with the discomfort of the pregnancy.

On the other hand, the doctors in charge also weren't making any headway with Shawn so they kept referring us from one hospital to the next , hmm... come and see how I was running around Lagos like a sprinter preparing for the Olympics heavily pregnant with another baby strapped to my back with no help from anyone or anywhere. I was weak and tired all the time.

It was during one of our appointments, that they sent us to the teaching hospital, and because it was on a first come, first served basis , we left home as early as 5am, by the time we got there, the crowd at the children's section of the hospital was unprecedented, children afflicted with all manners of ailments were scattered all over the place and the sight of it would make your heart bleed.

When it got to our turn , Shawn became some sort of lab rat for the student doctors who had never seen anything like that before.

They kept whispering among each other, asking us every possible question and as we responded, they wrote something down in their notepads.

After what seem like another decade , we were called in to see the consultant, we met this all serious but matter of factly middle aged man, he continued from where the student doctors stopped with the questioning and asked the student doctors their observations and prognosis, they all kept giving him different names of ailments and he kept smiling.

After they were done, he took the baby from me and asked if we have ever heard of the condition called 'ectodermal dysplasia'?

My jaw dropped like 'ecto-what'?

He went on to explain how the condition was prevalent in the Europe and the USA and almost nonexistent in Africa or at least very unreported, and how it's passed from one parent who has the recessive gene to a child of the opposite gender.

I was relieved and scared at the same time. Relieved that this unknown finally had a name, meaning there was hope in sight but scared at the mouthful pronunciation of the condition's. As my mom used to say; 'the bigger the name of the sickness, the more expensive it gets'

I suddenly became numbed, , the room was quiet, even the student doctors haven't heard about the condition before.

I'm sure if you dropped a pin in the room at that moment it would be louder than a bomb.

The consultant paused for emphasis, .the only thing I recalled was that I grabbed my child from him and started crying and asking God why?.

The consultant touched my shoulder gently in a bid to console me and then reminded me of my condition.

He went on to tell us how lucky we were that it was detected on time and that I was pregnant again because most people would waste resources taking care of the child until the strain of it took its toll and impeded the birth of another child.

I asked him if Shawn would grow up normally and do what other children his age could do and if the condition was curable.

He said if I kept him from convulsing he'd be okay that the condition was like sickle cell anaemia, it could only be managed, it had no cure.

The consultant told us how he had doctor friends abroad who had the condition and that the teaching hospital even had one of them at the dental clinic department and he gave us his name.

As we left the consultant's office that day almost ten years ago I was torn beyond words, I blamed myself and my family tree for doing this to my child but little did I know that I was in for another shocker of my life

A year and three months later we welcomed Alvin Utibe Emem Effiong Charles Udoh, he was everything Shawn wasn't at birth.

He weighed 4.3kg, he had hair , he was robust and I was happy, at least he'd be my consolation for the suffering I had gone through with his brother or so I thought.

But that wasn't to be , as soon as he was wheeled away from the theater, they discovered he had low blood sugar and could hardly breathe, the paediatrician immediately placed him on oxygen and we were on admission for another five days.

Alvin wasn't done, we had barely gotten home after the five days when he turned a code blue and sent everyone into a panic mode, when we arrived at the hospital , tests were carried out on him and after all the tests, he was diagnosed with pneumonia and that kept us in the hospital for another one week.

I began another round of sitting on hospital plastic chairs, nursing a newborn with swollen feet coupled with the pain of the tears I had had during delivery and a bleeding that just won't stop. I honestly don't know how I survived, I guess there's something called Grace after all and I'm a living testimony.

We were admitted in three different government owned hospitals and the least time we spent in any of them was five days!.

I know you'll be wondering how I managed financially with the shoestring budget of a civil servant...hmm, thank God for the former governor of Lagos State, Mr Babatunde Fashola and his free healthcare services for children at the time, he saved us.

This whole time I hadn't seen Shawn because they wouldn't let them bring him into the children's ward because of infection and it added to my worries.

The only good news was that the whole time I was pregnant with Alvin , Shawn didn't show any signs of using his limbs. He would lie down on one spot not moving and it scared me no less even when the doctors kept reassuring us that he'd walk eventually, I mean I had every right to be concerned the boy was more than a year old.

Miraculously, on the day his younger

brother was born, as soon as he heard the news, he stood up by himself and started walking. I guess he knew his kid brother would need him to survive whatever life dealt him.

In the meantime, I went back to researching about ED just to find ways to help Shawn and that was when I stumbled on the similarities between both boys. Alvin's case was milder but he definitely had the condition, I couldn't deny the signs anymore, so I took him back to the teaching hospital and my suspicion was proven right .

It was at this juncture, I knew I was in for the fight of my life but my main concern was keeping my children alive and protecting them from the harsh realities of this world but unfortunately, in doing so I lost myself.

You know since I started telling this story of ectodermal dysplasia and how it struck me heart wrenching blows when I least expected it, I have read comments about how strong I am, some people even labelled me a 'super mom' - #pheeews!!.

I smile half the time because inasmuch as I would like to take credit for being all that and more, I'd like to be painfully honest and say I'm eternally grateful to everyone who left me those nice comments and I don't take them for granted but deep down I know I wasn't always super or strong.

I knew there were times I lived in denial, told myself that I did everything right in my life hence I didn't deserve to suffer that much.

Times I was ashamed to be seen with my children in one room, I didn't take them out or let family and friends come visiting because I wasn't strong enough to start explaining my situation to anyone.

There were days I took out my frustrations on everyone, even told the children I wished they died and I wasn't burdened with kids I wasn't sure would amount to much.

I remembered there were times I fought with God, like literally wrestled with him , asked questions like what did I do to deserve these children?

I went as far as asking God why he hated me that much that He afflicted me with two not one of children with special needs.

I even stopped going to church at a point because I stopped believing.

Many nights I cried and beat myself up like it was all my fault that I did this to my children.

I went to bed sad and broken , I indulged in sodas, sweets and confectioneries, they became my solace.

I lost my beauty and myself , added weight astronomically just to punish myself like some kind of penance.

It got so bad that I stopped honouring invitations for social events because I didn't want people to ask of my children.

For those of you who know me, and say to yourself I want to be like Idara , she's always smiling, bubbly, vivacious and over assertive, she's made it her calling to spread happiness wherever she goes....hey! I just want to let you know it took me ten years to get here, it was one mighty hard road and more than half the time I felt alone.

Ectodermal Dysplasia took more from me than just my children it forcefully stole my essence and will to survive.

However, I got a rude awakening when Shawn and Alvin's came back from school one fateful day in January of 2019 , to complain on how their teachers and classmates bullied and jeered at them every time because of their condition and looks.

It was then I realized, it was finally time to tell OUR story.