Wednesday, July 7, 2010

Choosing Right... My difficult Decision

Today is my late cousin's birthday. She would have turned twenty today. She died from complications arising from her sickle cell condition five years ago. This post is dedicated to her and everyone who has to, in one way or another, deal with sickle cell - Parents, family, friends, spouses and children of people living with Sickle Cell. It is also for the unmarried, to encourage them to consider this factor in their choice of life partners.

For those wondering what I am talking about, Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.

When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. There is currently no universal cure for sickle cell disease

This is a story I wrote after her demise... Read, and more importantly, choose right.

-Mummy, please can I go out to play?
-Sure dear, right after you put on your sweater.
-But mum! It’s not that cold and none of the other kids are wearing sweaters.
-I know dear, but mummy does not want you to get sick
-Does it mean all the other kids’ mums are not worried about them getting sick?
-No dear, but you are different, you are special and so why don’t you go right on, put on your sweater, come give mummy a kiss?
-Okay mummy.

-Mummy, can I go out and play in the rain?
-No dear, it’s too cold
-But mum! All the other kids are doing it. Besides, I have not taken my bath so I can do so in the rain like everyone else. I’m not feeling cold mum. Please! Please say yes!
-My dear, you may not go. Your hot water is ready. Why don’t you go have your bath and mummy will read you a nice story?
-But mum!
-Shhh! Mummy loves you and knows what is best for you. I’ve told you…
-Yea, I know – I’m different, special but it sure doesn’t feel like it! I really wish I was ordinary so I could play in the rain like all the others

-Mum, I’m ready for the party!
-Sweetheart, you’re not planning to go in that are you?
-Why not mum?
-It’s the rainy season and mosquitoes abound. Can’t have you catching malaria - you know.
-But mum, miniskirts and halter necks are the craze of the season. I can’t go in that jeans trouser and long sleeves you picked out for me, I’d look so odd.
-I’ve told you dear; odd is a synonym for special.
-Special is also a synonym for weird mum. Why can’t I be normal like everyone else? Oh well, I’ll just not go, which probably what you wanted anyway.
-Sweetheart, it’s not like that. You don’t understand…
-Yes, you’re right. I don’t understand and I’m not sure I want to because you don’t seem in any hurry to explain it to me
All my life, all I’ve heard is - Don’t go out in the rain, wear your pullover, Take your drugs, Let’s go for check-up, Beware of mosquitoes.
What I’d like s for someone, anyone to tell me why. Why do I have to be special? I never requested that I be special. Why can’t I do normal stuff like everyone else?
Why do I have to take drugs even when I’m not sick? Why do I have to take so many precautions not to get sick and why do I get sick all the same? Why do I have to go for check-ups all the time? Why mum, why?
Why me? All I want is some fun like all the kids at school. All I want is to be normal. Why do I have to be different, odd, special, weird? … She broke into sobs.

My eyes mist over and as I take my hanky, I heard my name being mentioned. ‘Are you alright?’ the groom-to-be asks. ‘Yes, yes I’m fine’ I lie but I am anything but fine. That walk down memory lane had not been pleasant in the least. I feel myself about to burst into tears again as I remember Nana Ama, my little sister who had lived to be all but fifteen years old. Fifteen years of take your drugs, wear your sweater, where is your hospital card? Let’s go for check up. Fifteen years of having to catch up on activities and lessons she missed on ‘sick days’. Fifteen years of knowing she was different, special, odd. Fifteen years of knowing we all have to die sometime but she is more likely to die younger than her other classmates who are not special like her. Fifteen years of following statistics – like how long on the average she can expect to live and learning that on the average, it is generally not expected for special people like her to live past forty years?

How do you explain to a child who was brought into the world through no fault of hers and definitely did not choose her parents that Her parents through no fault of theirs have each donated an S or C and so she has what is known as sickle sell and will have to be on medication for the rest of her life and miss out on a lot of the joys of life if she wants to live to see her eighteenth birthday? It beat my mind then… and it still does.
Oh Nana Ama, may her soul rest in perfect peace. I make the sign of the cross.

My FiancĂ© Kay cups my chin gently in his hand and lifts my head. He searches my tear-streaked face and asks ‘Honey, are you alright?’ ‘Am I alright?’ I laugh hysterically ‘Oh yes I’m alright. The one you should be asking if she’s alright is Nana Ama.’ ‘But Honey, Nana Ama died years ago.’ ‘Yes! She did’ I reply. ‘She sure did. But has she ever been able to come to terms with her life and death? Why she had to be special? Why she never got to marry, have a child of her own, and build that fashion empire she dreamed of and…’ I broke off into sobs.
Kay holds me and strokes my hair whilst I cry for what seems like an eternity. The marriage counsellor has discreetly disappeared. When I finally lift my head, Kay asks ‘Is it better now? Is it okay?’ ‘No, it is not’ I say grimly but with a quiet resolution. ‘It can never be okay. I’m sorry Kay but I hope you understand why I can’t marry you anymore.’

Kay takes me into his arms with understanding in his eyes and I do not think I could have loved him anymore than I did in that moment. He cries with me for what seems like hours.

After a while, I lift my head and ask ‘Can we go home now?’
Whoever said that doing the right thing was easy lied. Even though my head told me I was doing the right thing, my heart kept saying ‘you traitor’
There were times when I wondered if I was doing the right thing at all and there were other times when I felt like being selfish and going right on to marry Kay.
Kay was a world of comfort to me in those times. He was struggling to come to terms with what was happening himself but he saw my anguish and turmoil and did his best not to add to my confusion.

It was only once He asked me to marry him all the same saying we could decide not to have kids and adopt. I was sorely tempted to say yes for a while, I must admit, but only for a while. I remembered the six children Kay had always dreamt of having and how he even had their names picked out already and I looked at the pain in his eyes and how much it was costing him to make this suggestion and I found the strength to say no, I could not let him make so great a sacrifice.

Watching Nana Ama grow up had been no fun and I did not want to risk having to go through the same experience with my own child. I did not want my child to suffer.
Neither did I want to adopt. I wanted kids of my own and Kay did too.

Since these were the only two choices available to me were I to stay with Kay, I decided to let him go. Believing I was doing the right thing, making the right choice, the right decision.

Today, looking at my four healthy children and doting father, and looking at how happy Kay is with his own six children and loving wife, I’m sure I did.


  1. oye, darling...well. i've been thinking about this and i hope u know that it's not everyone that can do what is now said to be the 'right thing'. SC or SS or CC is a possibility not a certainty even with the traits present. i hope i never have to make such a choice

  2. true, not everyone can... and true, its a possibility not a certainty but I think its unfair to gamble with other lives. If two people decide to stay together for love, they should please consider the having kids part well. In the same way SS or SC is not a certainty, having kids is not a MUST. Its really not fair to the kids to have to suffer because of a union they had no hand in deciding on. maybe when science makes headway in finding a cure or vaccine...

  3. There is divine health (notice i didn't say divine healing)
    I believe in God
    beyond all our agendas
    I have good friends who are both AS and their daughter is AA
    I'll say what i used to tell my siblings a long time ago
    "Let's trust God"

    That is exactly where i am right now, "trusting in God" because he is faithful and even though many people have bad testimonies, look out for the good ones, that is who i am!

  4. Hi Tish,

    It's very possible, what you mentioned. With a couple who are both AS,there is a 1/4 probability that they will have an AA or an SS child and 1/2 probability that they will have an AS child. However, it is also very possible they will have all SS, AA or AS children since the sample size from which they are drawing is infinite.

    I believe God is omnipotent and his power transcends all biological laws since He created all things. However, He also gives us the power of choice. Unless God decrees that guy/lady is the only one you can get married to and that you two MUST have children, I really don't believe it's prudent to put God to test for testing sake, especially not where it's not your health, but another's that is involved.

    The choice of a marriage partner is one of the choices most influenced by the flesh so caution must be exercised in what we attribute to God there. Some churches at home even add this to the list of tests (HIV/AIDS, etc) that you have to take before you get married and the marriage counselors advise you.

    At the end of the day, it's between you, your prospective spouse and God, however, this is a choice in which the person most likely to be affected has no say and it's completely up to you what weight you attach to their interest and how well you hear what God is saying concerning the issue.