BROKEN BUT BEAUTIFUL

Breathing Is Hard

Today for me is about reminiscing, I just keep wondering how far I have come from that fateful day in the doctor's office where my life changed forever.

Sitting in that consultant's office in LUTH, that hot afternoon in the May of 2010, I was pregnant, worn out and had Shawn who was five months old at the time, strapped on my back.

I held my husband's arm tightly afraid of what the outcome of the results would be.

Just in front of us,this grim looking consultant flipped through the initial reports brought in by the student doctors, he was so serious I was convinced in my guts something was wrong with my child.

In that instant, a silent prayer escaped my mouth, it was a helpless mother begging God to let my baby be okay, even though my gut feeling was telling me something entirely different.

When he was done flipping, the consultant looked up from the reports looked at both of us intently and asked me to unstrap the baby on my back so he could examine him.

As I handed the baby to him, my hands were shivering, he smiled at me reassuringly and said:

'Madam, do you know what's wrong with your child?'

I looked at my husband, he was just as confused as I was. I opened my mouth to speak but all that came out was a whimper and I ended up shaking my head instead.

He was still smiling as he continued with examining the baby's pulse, gum, eyes and the texture of his skin.

He handed him back to me , sighed and asked as a matter of factly; 'have you people heard of Ectodermal Dysplasias?'

My heart sank, my whole world literally came crashing with that one question, little did I know how badly at the time. (Sighs).

When we said we didn't , he went on to give a long history of how it was a rare genetic condition, how it was only prevalent in developed countries, how it was like sickle cell anaemia with no cure and how they should never be allowed to stay in hot environments yadayadayadaya.

In all that lecture, the one thing I remembered him saying was , 'you guys are lucky, this disease is for rich people!'

See me see rich people disease na?

Chai!

A bloody civil servant with no inheritance anywhere in the world , whose take home salary wasn't even up to 40k and a husband/father that just lost his job.

The ultimate question on our minds; How were we going to survive with this child? How were we going to keep up with the different doctors appointments, his medications , his dietary needs and everything else. Most importantly, how were we going to tell the people we were squatting with at the time that my boy was very sick and they needed to make a few adjustments so he could stay alive?

I was scared, very scared. I did the next humanly thing possible… I broke down and cried!

My life literally ended in that consultant's office. I won't Iie, I saw it ebbing away right in front of me.

Still reminiscing, I recalled recently,I was going through some research findings on Ectodermal Dysplasias and its impact on breastfeeding when something I read in one of the journals kicked me hard in the gut.

The article talked unequivocally about the fact that 'not all mothers who are carriers of Ectodermal Dysplasias may realize that may face challenges if they choose to breastfeed'

As I sat there with the journal in front of me , I took a mental flight down memory lane, when Shawn and Alvin were babies and I couldn't breastfeed them.

Yea you read me right, I can tell you with my full chest and without mincing words, that I'm one of those mothers who didn't get the special 'privilege' of experiencing the joy of motherhood through breastfeeding. (Lol)

I kid you not , I heard that a lot, especially on immunization days when other young mothers shove it in your face like it's a popularity contest or nurses telling you it's an abberation to bring feeding bottles and formula to the clinic.

I think I was always on a defensive mode everytime we went to the hospital, ready to give anyone the eye or attack them with sly remarks if they as much as mentioned the fact that I wasn't using my boobs for its God's given errand on earth.

Taking public transportation, was another nightmare, just because Shawn could cry for the United Nations, everyone became an emergency breastfeeding counsellor. 'madam, give the pikin breast na make e keep quiet, this cry no dey disturb you for ear?!!!'' I just didn't know how to explain myself at every turn , so I just stopped explaining.

Believe me, it was one experience I wouldn't wish on my worst enemy.

Let's not even talk about the days of drinking palm wine and raw pap to the painful task of having two hot heavy stones placed on your chest to aid the process of lactating,

Or is it the humiliating scenario of having my mum and aunty pulling and kneading at my boobs just so it could produce milk! Umunna'm, I suffered.

At a point I think I detached myself

from the whole experience and I couldn't be happier when Shawn wouldn't collect the breast milk anymore when it started coming out in a few miserable droplets, many frustrating weeks later.

it was an unexplainable relief (praise the Lord kind), when on getting to the hospital, they said the breast milk was bad and I should stop forcing it on the boy! Ope oooo!!

But in all that time, I was ignorant about what I was faced with.

However, this journal has opened my mind and eyes to seek answers and ask these fundamental questions, what if I am a carrier of Ectodermal Dysplasias? What if it's true that male children get this rare genetic condition from their mums? But with the high cost of genetic testing in naija , I guess I would never know...would I? (Sighs).

My reverie took me back to this conversation I had with Shawn a few days ago…

Shawn: 'Mummy, I want to tell you something. Promise me you won't tell.my daddy?'

At that instant, I sat up straight because anything that my boys cannot tell their father was definitely something serious, like they literally tell him everything.

I tried to keep calm, but my shaky voice betrayed me.

Shawn: 'you have to promise me , you won't say anything to him or I won't tell you anything again.

I cleared my throat, this wasn't going to be an easy lie because I have never kept any secrets from my husband but this was my child trusting me with something very important, how could I not comply?

Me: oya tell me , I promise I won't say anything to your dad'.

Shawn: (don't laugh!) He looked at me like sternly. ' How do you know if a girl likes you'?

I jejely swallowed my laugh back, exclaimed in my mind…' so we don reach here? Haaaa!

But I had to wear a brave face, hold him close and smiled into his face.

I touched the tip of his nose and teased him...'are you liking a girl?'

Shawn: 'ohhhh, mummy nau, be serious'. (He wriggled off of me)

Me: (smiling) Okay, sorry. Tell me who's liking you?

Shawn: it's xhjjjxy, I don't want her to like me!'

Me: 'why?'

Me: Don't you know tomorrow, she'll start saying I'm not fine(he had this weary sad look on his face)

Me: Wait, who said you are not fine? (I was devastated) Don't ever say that about yourself, ever again. You are the finest, kindest boy I know and I'm proud to be your mum, if any girl doesn't see that, then she's not for you. Did you hear me?'

Shawn looked at me, at that moment I could see he needed me to reassure him and I just held him there and kissed him.

No, I wasn't going to cry and make him feel sorry for himself, we are in this together and it's the whole nine yards.

At that instant, I was relieved that he could trust me enough to come to me, I definitely must have done something right.

But I had another thing clogging my mind, I wasn't sure how I was going to broach this subject with my hubby.

It's not like talking about girls was new to us but this was different.

In the meantime, I savoured the moment, this mother and son time, I wasn't going to give up for all the blood diamonds in Sierra Leone. It was too precious for me.

I lectured him about girls and everything he needed to know about us (girls).

However, that night, his dad and I spoke about the situation and decided it was time to take 'THE TALK' a step further.

After all, my boy was becoming a man and fast too!