Risking a ‘Miracle’

 
Hi guys!! It’s been quite a while! This is a post to raise awareness on Sickle Cell Disease, and the need for people to know their sickling status long before they fall in love! It’s inspired by many true stories – Stories of the many parents who have spent countless hours and money in hospitals, and endured guilt that only they can understand; stories of many kids who have suffered right till their adulthood, and stories of the many other kids, who did not make it. 
Also, it’s quite a long one, I hope you like it, and learn from it! If you have any experiences, any knowledge that would help someone, anything, share it in the comment section, and share this with a friend! Who knows who we may be reaching out to?
Elise
 

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It wasn’t a big room. But it was filled with more people than it was made to hold – as usual.
And it wasn’t my first time here, but it had been a while. I’d had many encounters with different doctors, and different waiting rooms – but this was my favourite one. Growing up, I literally lived here! But it had been so long, I’d almost forgotten all about it… the musty smell of harsh antiseptics, the screech of cleaning equipment, the shuffle of haughty nurses (all with asses so large, it looked as if it was one of the requirements to be a nurse!) the eager, fake-humility of medical students, and the loud barks of arrogant doctors/nurses. It was all so familiar! Oh and of course, how could I forget the ever so common squabble between impatient patients!
By the time I was 12, I had been to Dr. Asafo’s office so many times that all the nurses, cleaners, pharmacists, security men, doctors and orderlies knew me too well. I knew all the nooks and crannies of that hospital. I knew when to sneak in, so I could skip the long queues. I knew that people would hardly pity me, so sneaking in to see the man himself was always my best solution. I knew that if I went in on Friday mornings, I’d get mango juice and hot bread from him.
I was an ultra-skinny child. Ultra-skinny is what I like to call it, because it sounds nice. I got tired of all the teasing in school, and all the random people trying to feed me, (“Akatesia, endzidzi aah? Dzidzi ai?”) that I coined my own word for it. Ultra- Skinny.
I didn’t like the fact that I was that small. But it was not something I could do anything about. It would never change. You see, I was born with the Sickle Cell Disease. And in Kumasi, Ghana, where Bone Marrow Transplants weren’t yet available, sticking to my drugs and instructions was the only way to survive. Even then, I still had crises.
I’d learnt to deal with it, and it’d been working just fine – to a large extent.
Today, I wasn’t here to see Dr. Asafo for the usual check-up, or the once-in-a-while ‘hello’ visits. I was here to show him someone. I needed his sickling status checked. I didn’t want a situation where I would bring children like myself into the world. I needed to know well ahead of time. I could have had him check it anywhere. But I also valued Dr. Asafo’s opinion.
 
When I was seventeen there was a young boy that I was attracted to – Barimah. He was quite amazing. His sickling status was our main barrier – AC. I made it clear that we could not be together. But he would not relent. It’s the thing I miss most about him. His unrelenting nature. If he wanted something, he went for it. “Carpe diem, quam minimum credula postero” that was his anthem – day and night. But I couldn’t live that way. At least not regarding the person I decided to have kids with. I could not willingly bring a child to this earth who would suffer. I had to think about the future. I couldn’t always carpe diem!
We lasted two years… and over those two years, he actively researched, and found information on Sickle Cell SC disease… and how it wasn’t as bad as the SS one. Once, he sent me a whole PowerPoint presentation, on things we could do for our kids, if in the future, they ended up with Sickle Cell SC Disease. One afternoon, after one horrible crisis, my mind was made up. Nobody I loved was going to have to go through this if I could help it. Barimah had to go, and hard as it was, it took a year for both of us to finally come to terms with our separation.
I remember asking mum when I was about 13, why she married dad when she knew they could have a child with SCD. (Because I knew they both knew before they got hitched.) She looked into my eyes and said “We wanted a miracle from God.” I can’t explain the kind of rage I felt. “You wanted a miracle, so you decided, why don’t we test God’s miracle-doing business by having a child who will be hospitalised once or twice every month? And one that would die at age 4? Is that how it works?” I was in a frenzy, and she was almost in tears!
I didn’t talk to either of them for about two weeks. But then I realised that there was really nothing that could be done – the milk had already been spilt – I lost my little brother when he was 4. I was 8 then. They never had another child, and it’s been just me since. I had to make it count.
So I was here to ensure that I didn’t go down that path with Mick. I couldn’t spend this much time in a hospital over my child – assuming I lived long enough to have any. And most of all, I would not subject any child – any living creature, to all I’d been through.
I had the power to make a difference with my knowledge. And I believed that love meant that I would use that knowledge for good, no matter how hard.
The first time I met Mick, we were opponents on a high school debate. Of course, thanks to my size, I get underestimated a lot. He’s a large burly fellow, and he was the lead of his team, as I was mine. They didn’t expect much from us, so for the most part, they were very complacent. After one round, where they lost completely, they got the memo, and started to get serious. Mick was a good debater. And he didn’t shame me, or comment about my size. He generally didn’t say much – unless it was his turn to debate of course. I was am a chatterbox!
“Miss Koomson. Dr. Asafo will see you now.”
“But didn’t she just come here? Madam I’ve been here since morning, why is this one going before me?” The usual chatter of impatient patients. I was too used to all of it.
Mick just followed me. He had been extra quiet since morning. We both knew that this could be it. The end of all we were hoping to build. He had a dramatic way of putting it. “Your love for me is not unconditional. Because I know that if I were to have any S or C in there, you’d disappear from my life. So why don’t we just check later?” I’d agreed to later for the past three years and a half.
But it was dangerous. I had fallen in love. And I had to think for my kids. My future. His future. I believe in miracles. But I believe that if God has given me the ability to do something about it, he’s not expecting that I ignore that ability and ask for a miracle!
“Akosua… it’s been ages! I see you’re well” He always had that smiley teasing way about him. I was so nervous. Mick was calm, smiling when he had to, most likely not even following the conversation. After our usual banter, Dr. Asafo had one nurse draw blood from him, and then asked us to hold on for a bit outside, while he saw some other patients.
I don’t know if the whole situation was now finally dawning on me, or if I somehow suddenly felt that we would definitely have to break up… but I got so nervous, I could tell I might throw up. He looked at me and he could tell. He gently grabbed my bag, held my hand, and walked us out. I was too nauseous to utter a word. He knew! He knew, and that made this all so much worse. What if I couldn’t have him? What if I ended up with someone who had no clue when I needed to leave? Someone who would be quickly bothered by my crises?  What if? I got lightheaded really quickly, and so he stopped me.
“We don’t really need the results, Akosua. Ok let’s not have kids! We can adopt… We’ll stage a pregnancy if people want to assume it’s actually ours…Or what about a sperm donor?
I want you. I don’t want to lose you because we could bring sick kids into the world. And I don’t want sick kids either. I don’t want them to suffer. But I really truly want you.
But if you decide that you can’t be with me, I’ll be okay with that. I can be your friend. I can pick you up when you need me to, I can just… I don’t know… just… let’s not do this today, okay?”
In that minute, it dawned on me that maybe, this is what my parents had. Maybe this is why they risked love for a miracle….
I couldn’t afford to take that risk.
 
 
Akatesia, endzidzi aah? Dzidzi ai? – Young lady, don’t you eat? Please eat okay?  (Fanti, a Ghanaian language)
Carpe diem, quam minimum credula postero – ‘seize the day, put very little trust in tomorrow [the future]’