By Omotola Dehinde
My name is T Adenle-Oluwole, born almost four decades ago and by the grace of God the only standing warrior out of three warriors in the family.
I grew up a lonely child. I was always indoors, covered up because I was the one who got sick the most in the family. I had my fair share of sickle cell disease complications; I developed avascular necrosis (AVN) at age eight. I was on crutches, sleeping on the floor, my mum would pick me up after school and take me to physio sessions. It got better after six months and I was off crutches.
I was allowed to take the common entrance at primary five but unfortunately, I was on admission on the examination day. I told my parents to take me to sit the exam with the drip in my hand and later returned to the hospital. When the result came out, I passed and off I went to secondary school. I was fortunate not to have serious crisis while in secondary school.
I later decided to learn makeup in 2006 because I knew keeping a white collar job might be hard for me. I went to Lagos and trained at the headquarters of House of Tara. After two weeks into the course, I took ill and was taken to the hospital in Ibadan when I was not getting better. My mother did not want me return to Lagos but I summoned courage and went back to complete the training and got the certificate.
I became the studio manager for House of Tara (alma mater) and opened the Ibadan branch in 2008. In 2011, I became the personal makeup artist for the First Lady of Oyo State. In 2012, I was coping with work but AVN reoccurred in September and I had to be back on crutches, doing physio while still working. God factor cannot be over emphasised as we prayed before and after the surgery and it was a success. My recovery was speedy and the surgeon marvelled at God’s grace over my life and I resumed work fully mid 2013.
Finding love was difficult because the moment they get to know my status, they left. At a point, I gave up on love and faced my work. Then in early 2011, a long lost friend (now husband) came to see me in the office and we started dating.
One day, we were talking and he said ‘Tunrayo, you don’t have to hide, I know your genotype and it is okay with me.’ I asked for his and he said AA but I insisted that he should conduct another test and the result was AS. We tried parting ways many times but we could not. He was/is a caring person and he was there for me all through the AVN and surgery period. My husband has my back always, caring (stays with me in hospital when I am on admission). He has truly made me happy.
One day in 2013, he said we could find a solution to child bearing or we could adopt if there was no way out. This led us to inquire about pre-natal diagnosis testing of foetus.
We started dating again because there was hope. We continued our relationship despite opposition from family members and friends. But my father supported me though.
We got married in 2015, shortly after the wedding, I listened to a radio programme about genotype compatibility and it was emotive. After, I heard a voice say to me ‘I will confound the wise with the foolish things of this world.’ A few months after my marriage, I got pregnant. I left my job knowing it would be difficult to cope with pregnancy, and I started freelancing. I did the PND test once I was pregnant and had to wait for two weeks for the result; it was the longest wait of my life.
To the glory of God, the result was encouraging and I had my AS son at the end of that year. I had a smooth pregnancy until the third trimester when I could not eat. My blood level was going down and so I opted for an elective CS.
Motherhood has been sweet and challenging but my husband was helpful with the baby and around the home. My husband is 12 years older than me and so I am like a big baby to him. At the beginning of 2016, our baby was just 13 months and I was sick and had to be hospitalised. My husband was not in town and I took my son to a church member’s home and my husband arrived the following day. He stayed with me in hospital as our son was being well looked after.
In 2018, I took a teenage girl in and adopted her. I am now on hydroxyurea as I was sick quite often and it has been helpful.
Sometimes, when I have to go to hospital, everyone comes along. They stay in the reception area, watching TV. I usually go to the day clinic in the hospital. Occasionally, I might have to go back and forth for several days to complete the IV and IM medications.
My children particularly the little boy knows when mummy is sick and needs to rest. He will at times come to my room and say, ‘mummy it’s paining you? Mummy I should go?, mummy sorry,’ and he will kiss me and tell me that he loves me before leaving the room.
I must say here that I have a strong family support system. My siblings are amazing and my dad has always been my hero, always cheering me on. I always try as much as possible to be there for them too when I am at my best.
I got pregnant again in 2019 and I was sick all the way. I managed to go for the PND test in Lagos. I bled for hours from the invasion and it got the consultant worried. I travelled to Ibadan the following day against their advice to go to the hospital as I was in severe pain. The result came out a day after I got to Ibadan. It wasn’t good news, so I had to make a difficult choice of termination despite being sick. It was hard for me but my husband was by my side all through.
I told God to give me double for my loss and beauty for my ashes and He did it! Towards the end of 2019, God gave me a vision for women living with SCD as the majority haven’t been fortunate with marital life. I created a WhatsApp group ‘Sickle mums’ and within 48 hours, we had over 100 members across the globe. The group has birthed ‘Sickle women international foundation,’ an NGO with the aim to ensure the wellbeing of women living with SCD through distribution of free drugs, mentoring, monitoring, grants and empowerment.
If you would like to get in touch with me above SCD or this article, pls do so on: firstname.lastname@example.org and do visit my blog -www.howtolivewithsicklecell.co.uk