SICKLE CELL WARRIOR - SAMIRA SANUSI

My experience with Sickle Cell Anemia had a great role in my life like so many other patients suffering from the disease.

I didn't have the absolute fun childhood that most grown ups today talk about and even wish they could go back to the days. Growing up with Sickle Cell meant so many restrictions and problems for me; I couldn't play and jump around like other kids, I didn't do any sports in school, I was constantly in pain and admitted in the hospital monthly. Most of the time I missed school attendance, and I didn't have time to make friends. Sickle Cell also meant taking daily medications which wasn't fun. My diet was also different, my parents made sure I ate healthy and included fruits and vegetables to my meals. Also, I didn't have much of chocolates, candies and desserts. With Sickle Cell, my growth was delayed and I was always the smallest in a group of friends, even though I was usually the oldest. Sickle Cell anemia has left me with many complications in my joints and internal organs, some of which have been corrected. But the worst damage it has done to my body is osteoporosis and other bone/joint disease that confined me to a wheelchair for 7 years.

Alhamdulillah we found a cure for this disease and I got cured, and Alhamdulillah I am learning to walk again.

My prayers are with my brothers & sisters suffering from this disease,you are not alone.

~Samira Sanusi

THE LIFE OF DEATH

I have been thinking a lot lately about death. No I’m not suicidal, or anything like that. Death has just been very rampant, not like it never was. What prompted me to write this piece is to ask you, my dear readers, have you ever wondered how it is knowing, actually knowing, really knowing, “this is it, my time is up. I am going to die here”? Have you ever thought about it? I have, especially since after I read the different reports and statements given by eyewitnesses on the crash of Dana air flight 992, from Abuja to Lagos, which took place on the 3^rd of June, 2012 in Nigeria.

It is a really scary thing to think of, it made me shed so much tears, not even their death made me cry as much as the thought of how they felt, knowing that this is the end of their worldly life. How did they feel? What did they think? Who was the last person on their mind? Was there anyone still hopeful that they could be saved? Did anyone make attempt to call their loved ones? Did anyone just remember The Lord of the heavens and earth and all that is in between and just surrendered to whatever will occur because of his/her faith? All these questions and so much more kept going through my mind. Only for me to realize a few days later, that I knew one of the victims. And those questions became even more imprinted in my mind. We will never know the answers or anything at all for that matter concerning the case. It’s all gone with them. Only The Lord can be The One to comfort their families.

I have come to firmly believe that The Lord is very merciful to us, not only does He allow us another day to have our lives set straight and on the right path towards Him, but He has also kept the knowledge of when and how we are going to die away from us. Yes, we are going to die, when and how is what we don’t know. That is ultimate mercy to me. If I knew when and how I was to die, I would panic everyday and die, before I finally die.

The subject of death is really an unwelcomed topic. Not because we as humans are trying to defy it, no, but because the thought of having to live without someone you know, or care about, or has had an impact on your life is just scary. No more of him/her. Never again till it becomes our own time to go. Even then how sure are we it will be the same as on earth?? But death is a topic that has united all the races, like it or not, at the end of the day, we become dust. No difference between what we become after decay and the portion of the earth we shall be buried in.

 Death is a reminder that nothing is permanent. Death is a reminder that there is indeed a Higher more Authoritative force, more Powerful being than we can ever imagine. Death is a reminder that we living have been given another chance and grace to set our affairs straight, to right our wrong and just give thanks for another chance at LIFE!

TO NOT HAVE AND HOLD

So, the very honorable (NOT) St. Valentines day is a few days away.What a bunch of rubbish, slaying dragon and all what nots. Please for the sake of common sense, why must one wait 364/365 days to celebrate love, exchange gifts, make time to say "I love you", and even wear the color red? Ina ganin ikon Allah!(I am seeing miracles).

This write up is to remind my fellow females, and hope that poor unsuspecting girls won't fall for this celebration. It is just a means for the boys to get some booty. Nothing goes for nothing, or rather, something goes for nothing. Uh huh, he takes you out, fast food romantic atmosphere, compliments you and makes you feel like "mehn, this has got to be love". You keep going, laughing and loving the feeling, and when the night is almost over, he makes you feel like its the perfect way to round it up. How? Going back to a secret place where he can show you how much he 'loves' you. For the life of me I still don't see how love lies beneath the pants. Its so sad and annoying that in this modern day, an assuming young man has to lie to have sex. Its a simple thing really, just ask or get married but don't use love or deception of marriage as a means to wipe off your pee pee. You should know that what goes around, comes around. A few days back I read on my TL(twitter time line) "#DearFutureWife I'm the only one allowed to measure you" wato, it's good for you to measure another persons dream girl but not yours, right? The main problem here is that its the girls that suffer everything.It might be your sister, or niece, or granddaughter that may be the next target.

Ittaqullah fil nisa'a. Fear Allah when it comes to women. That's the only thing I can tell my fellow brothers in Islam and humanity.

As for the girls/ladies, I beg you for the sake of your own happiness, valentines day or any other day, always keep in mind, if he loves you, he wont be shady, he wont pressure you, he wont lie and he definitely wont waste your time. Sex is worth the wait. Believe me, I know *winks*. Be bold, be beautiful, be brave, and do not sell out!

May your everyday be "Valentines day" and may the chance to show and be shown genuine love never pass you by. I did hear an "AMEN", right?

TODDLERS' RULE

I just fell in love with this piece when I read it on my TL, so you can say its a #stolen work.

This is dedicated to my toddler Aisha Abdallah T.J. and every other toddler of the world.

If it's in my hand, it's mine

If I like it, it's mine

If it looks like mine, it's mine

If I think it's mine, it's mine

Everything else is mine too!

WHEN AISHA WAS BORN -3

Day4/Night5 PS: I will get up today. I will go to see my daughter today. I must. It’s enough even strangers know my baby and I don’t. These were my thoughts when I opened my eyes this day. I told everyone around because I needed morale. By now, I could take more sips of water and had started drinking warm fluids, tea only, to be precise with just the tiniest teaspoon of sugar (no fair, I complained). I felt strong enough to go see my girl, if only movement didn't hurt so much! Told my ex to help me up, get me cleaned and dressed. He was surprised. Thought I was 'throwing smoke'. But I was serious. I was tired of the sheets around me and that bloody catheter had to go too! I did it, I got out of bed, I stood up, and my legs didn't fail me. Thank YOU GOD! The nurses were ever so happy for me. But only after a step, I was calling for a wheel chair! Trust our nurses; they totally ignored me, LOL. Which I must say was good. But after managing to walk, with aide of course, half way to the pediatrics department, we were informed that no patients were allowed in because they were having examinations. Even though mothers and fathers were allowed in, I was still a patient; therefore it’s a no zone for me.

I came back and cried my heart out. After all the hard work and effort and pain in every step, I couldn't see my baby.

Later on that night I was called to go and see her but I couldn’t go through the pain of walking again. Do you know how you get frightened or alarmed when, after putting your mobile on silent vibrate for a long time and have forgotten that its in your pocket, then it suddenly vibrates? Yes? Well that was how each step felt like, a vibrating shock right from each foot to the incision site. No sir, I wasn't going through that again.

Tomorrow is another day. Tomorrow is another day I thought to myself as I drifted to sleep.

Day5/ Night6 PS: it's a lovely day. It's a good day to see my baby. It’s a good day to try again. Wednesday, 22^nd July, 2009 a very memorable day for me, the very first time of holding, of cuddling, of seeing, and physically loving my daughter. When I got there I needed no introduction, everyone knew I was the tiniest baby's mother (loved the attention) mostly because of the double cannula I had. One on each hand. Those things might be rubbery for flexibility but I assure you they are very discomforting.

On getting to the ward, I was lead to the intensive care unit (ICU), a doctor was blocking my view of what was inside one of the incubators, but I knew it was my girl(her nanny was standing nearby). As I got closer, the tiny thing inside was stretching all limbs fighting to be free of her doctor, she was obviously crying but her voice wasn’t audible, but I could feel her pain not because she was my baby, but because personally as an adult, I use the yellow colored cannula(using the color code so as not to seem as an expert) for less pain and comfort-ability (as far as it will allow) the pink is OK but the green is only absolutely used when necessary. And she was being pricked with the yellow cannula. OMG! Why is she hurting her? What have I done to this baby? Was all I could think of. My heart was racing, my legs were shaking, I was trembling all over, and my incision site hurt like never before. The doctor took one look at me and said, "Please get a seat for Baby Fatima's mother." Then she told me, "don’t worry I am only stopping the drip. It was on all night. And nothing is wrong with your baby, we are keeping her to monitor her weight" I could only smile. After I had calmed my nerves, the tiniest human baby I ever saw, wrapped in a light blue cotton shawl was handed to me.

She had only diaper on, and it was way too large for her. She was all skin on bones, had bulging eyes, tiny mouth, cute button nose, tiny, tiny, tiny fingers and toes (had to count them over and over to make sure they were five on each limb). She was a purple/violet color and she looked pretty baked to me, that's because she was receiving photo therapy(had slight jaundice).  The first name that came to my mind was "my sweet little chicken peri-peri." She did kind of look like a chicken, with her legs folded up towards her belly and her hands tucked under her chin……. The most beautiful sight I ever saw.

Then just as I carried her, the rest of the umbilical cord dropped onto my laps. I couldn’t hold it in any more, the tears came pouring out. I witnessed something good, something new.

God was probably letting me know that with the pains and sadness I went through while pregnant and after delivery, I will also witness great and eventful tidings with her.

I spent nine more days between the O and G ward and pediatrics ward. I was ready to go home after 14days in total of being in the hospital. I asked to be discharged and it was granted. My daughter, who was by then named AISHA, was not going to be released. Her doctors thought I wasn’t strong enough to take care of any one just yet, but I insisted and it was finally granted on the grounds that we return after a week and if she was still below 2kg (she was 1.70kg) she would be re-admitted.

Aisha is now 2 years 5 months and 2 weeks old. She weighs 13.5kg, and one of the liveliest toddlers in her daycare. Was not readmitted and has never had cause to even be admitted at all since we left the hospital. 

Indeed there are better days to come for me and my Aisha. Insha Allah.

WHEN AISHA WAS BORN -2

Where were we last time? Ah yes, I was carried away in a tricycle from the OR to the O and G ward. I remember it being a really bumpy ride and me admonishing the driver to be gentle and careful. He had to stop a couple of times for me to catch my breath. Dear God, the pain was excruciating. I also recall being so hot and having a battle with the sheets that were on me. I'd take it off and someone would cover me up again. Didn't whoever it was realize I was feeling so hot?  It turns out I was stark naked and out of the OR and there were patient-visitors around! My poor hubby must have been stunned by my nudity in public! I'm the kind of patient that doesn’t keep how I feel to myself. Life's too short for that.

Then came the horrible part of transferring me to the bed. When I heard the matron in charge say "on my count of three" I just screamed out "noooo, wait, just wait, leave me here. I'm OK here" then I drifted back to sleep. She somehow managed to count to three and "aaarrgh." Torture. Unmodernized, advanced torture. I pray no such for anyone. But I was on the bed. So uncomfortable, didn't know if I wanted it raised or lowered, or if I needed pillows or not. One mistake I made though was shifting from my side to my back. I was stuck on that position for 5 days; every movement was a cry for help!

Night 1 (post surgery, PS): was a really rough night for myself and the doctor on call. He was instructed by my consulting gynecologist to take my blood sample every 4 hours for hematocrit and hemoglobin level checks. He also had to check my liver (by palpation) every 2 hours. But I couldn’t bare to be touched, not for anything except for my pain killers and I wanted it I.V and I had to know the dose. So, he would come close and say, "Fati, please I want to take your blood sample?" I would keep repeating, very agitatedly too. "Don’t touch me, don’t come near me."

How we got through that night is just the grace of God!

Day1/Night 2 PS: I begged for water. I was thirsty. Very badly. I begged for my pain meds. I was in pain. Very badly too. The pain meds were right there in front of me, but I couldn’t reach them. Lord knows, if I could, I would have injected myself. I told my doctor that and he was really impressed by my honesty!

Everyone who knew me came to congratulate me, "Madame congratulations, you should get well soon to see your baby, she is a beauty, very strong despite her tiny size." It was the same congratulatory comment I received. I was proud. I was beaming with joy. I was eager to get well. I was greatful for His mercies and the wonderful team of pediatricians (nurses and doctors) and gynecologists (doctors and nurses) taking care of my baby and I.

My husband (now ex) could only tell me how tiny she was, how scared he was to pick her up, how his riffle weighed more than her. But that she was the most beautiful thing he had ever set eyes on. Said she had my hair texture (amen) and may probably take my petite statue (that would be superrific!)

Night was hot and painful and I felt dehydrated despite the drips I was on.

Day2/Night3 PS: I used what little strength I had in me to beg for water. My lips were chapped, my tongue felt sticky, my saliva was thick and my throat was dry. "I will die o!" was all I kept saying to anyone that came close enough to hear me. My veins were collapsing; new and painful sites on my body were pricked. I was too tired to even flinch! I was still on my back. I couldn’t breathe at night, it hurt to exhale, and it hurt to sit up even with support. It hurt to be cleaned and changed. It hurt to pee (even with a catheter on). It just hurt to be me.

The consulting pediatrician came to personally tell me how my girl was faring. She is a survivor, the daughter of a survivor. I needed to want to get well, and soon too.

Day3/Night4 PS: all glory be to God, I was given the go ahead to have my very first sip of water. My bowel movement sound was A-OK! (to me it was S-Starving). I was to have just 5 Eva bottle cap of water every 3 hours. OMG! The bottle was right there beside me, if only I could just reach out a bit further…..

By now, breathing was a problem for me especially exhaling. I had to change position, I had to sit up, that’s what the doctors and nurses kept encouraging me to do. My ex kept trying to lift me to sitting position, my 'nanny's' tried to balance me but it was damn too painful, the incision site felt raw, the surrounding site felt pulled towards it. Moving any muscle was not a good idea as far as I was concerned. Breathing was a total effort, the only solution was to raise the head of the bed and prop me up with pillows. Then I had to be on oxygen for the rest of the night.

It was a really long night for me.

WHEN AISHA WAS BORN -1

   Frankly speaking, I have no bloody idea what happened! I was out cold and it took me 5 days to know the full story.

If not for the mercy of Allah, I would be dead. I came to know this much later even though it wasn't a direct comment. Personally, I felt something pushing at the softer part of my palette and I just wanted to spit it out. Urgh! Very uncomfortable, you know that feeling when you've got a terrible cold with mucus stuck up in your nose and then you try to relieve yourself by sucking it through your mouth to spit it? Yeah? Well that’s exactly how it felt. I later found out it was a tube being pushed down my throat… so anyways, I vaguely remember the midwife that was in-charge (shame on me, I don’t remember her name) calling on me to bring me to "Fatima, how are you?" I replied, very dazed, "I'm fine aunty. How are you too?" LMAO! OMG! Then I went on to ask "how is my baby?" She replied "she is fine." "And my husband?" she replied "he is fine too?" Okay, I need to let you dear readers know that I wasn’t asking 'how' he was but 'where' he was! It doesn’t sound plausible, right? Yeah even to me too! But it's true. Mehn did they have fun making jest of me with that!

By and by, I was taken out of the OR and carried away in a 'toktok' aka tricycle, aka keke NAPEP! Yesso, the prestigious 68 NARH, Yaba, with its great surgeons and very fantastic team of pediatricians lack a good moving ambulance. Even sadder is the fact that there is no provision for an OR in the O and G department. You guys know how our country people build things to save money naow????

Anyways …oh dear, my baby girl is calling. I'll have to stop here today. See you tomorrow. ISA.