The 27th of May is celebrated as Children's Day nationwide in Nigeria with lots of activities held for the kids at eateries, parks and other fun spots. While the day is always a good time for the children and their families, it has come to be a sober one for mine as we reflect on the loss of my brother 2 years ago, who passed away from complications of sickle cell disease. This year, the 27th fell on a Sunday and it was nice to go to church and spend the day praying and giving thanks to God for his life on earth and the times we all spent together. On this day, I especially worry for my mom's emotional state because as I have previously mentioned, she was the one with him at the exact moment he passed and had been the one caring for him all of his life.
I wanted to know how she was feeling on this day and asked her permission to share her thoughts and feelings with you in the hopes that maybe her perspective and experience as a mom with sickle cell kids will help someone else who is either caring for a family member with the disease or who has lost someone as a result of it:
Question: How are you feeling today mom? Are you ok?
Response: Today, yesterday or tomorrow, I feel the same; that is missing my son very much and trying hard not to show how sad I truly feel. To the Glory of God, I'm ok.
Question: What do you think about most particularly on this day?
Response: On this particular day, my thoughts are all about him. The previous night I had a dream about him. He was looking so happy and sucking on some candy (coconut candy to be exact). I went to mass and prayed for him, as we Catholics believe in constant prayers for our dearly departed. I try not to concentrate on sadness but to keep sweet memories of him in my mind.
Question: I know that no parent ever wishes to bury their child. How do you feel as a mother who has had to bury her only son?
Response: To be very honest, I am not totally sure I can explain the way I feel. Most times I feel as if I'm lost or confused and at other times, I'm in absolute denial of the reality of his death. For the most part, I tell or console myself that he is truly in heaven with our Lord and Saviour and he is happy.
Question: We all generally have a great relationship with each-other and are a tight knit family so what do you miss most about him?
Response: It's funny you ask this question; each morning as I brush my teeth, I end up choking because I push the brush too far into the back of my tongue and I remember him always rushing into the bathroom to ask me why I'm trying to choke myself and tell me to be very careful. I still hear his voice in my head every morning as I brush.
Question: For me, I know I accepted that a part of me died when he did. What has losing him felt like to you as his mom?
Response: It is impossible to describe the pain in my heart. I find myself more emotional and I cry sometimes just thinking about him. I secretly pray for death at times and actually still have a death wish. I am sorry to be this selfish because I have other kids and grand kids that I love equally but this is what happens when your mind leaves your body. I'm sorry.
Question: What were some of your biggest worries with him when he was alive knowing his condition? And did any of those fears manifest in the last moments you spent with him?
Response: I had a lot of worries while he was alive, for starters, he drove too fast and I was always worried about peer pressure. I worried about his relationships, him feeling depressed and asking "why me". I worried about him doing normal adult things like drinking, staying out late etc and was also very worried about his insomnia. The major manifestation of my fear was with his consumption of alcoholic beverages; he was a social drinker, and alcohol is deadly because normal red blood cells break down in 120 days in people without SS but for people suffering from sickle cell, it breaks down in 60 days. I will not go into the science of this but the bottom line is that it is dangerous for sicklers and constant consumption can affect most of their organs especially the liver, which is the largest organ in the human body.
Question: Has anything in particular helped make coping with your loss any easier?
Response: My deep spirituality and the rediscovery of my faith in Christ has helped me tremendously in coping with my loss.
Question: As a mom who still cares for another sickle cell child, what do you want other mothers to know and how would you advise them as they cope with this reality?
Response: It is hard to have one child with Sickle Cell but having 2 or more is twice the worry and heartache. My advice is to accept the reality of their health risks and understand the concept that no two SS kids are the same. Do the best you can for them and don't blame yourself (like I do) for their birth because it is difficult to watch your child suffer so much pain. All you can do is be present and reassure them of your love and unending support. Finally, be very prayerful and hand everything to God.
Question: What advise would you give to "fathers" on how to support their wives when caring for sickle cell kids?
Response: Mothers are by nature created with special abilities but some fathers also have this special gift of caring. My advise to fathers is to show understanding, compassion and love to their partners and let them know how you truly appreciate all that they do and sacrifice for the family.
Question: What would you tell young couples who have the sickle cell trait and are considering starting a family?
Response: This is not easy advice to give because it depends on the couple, their understanding of what Sickle Cell is all about and the possibility that they might produce children who will suffer terribly. But we thank God for medical institutes and modern technology as there is now a lot of research that gives them better chances than we had in the past of having children free of sickle cell. My advice is simple, educate yourself on SS issues and be current with medical research findings.
Finally, I asked my mom: what her hope for the sickle cell community in Nigeria was especially and what she thinks needs to happen to make things easier for the families who live with the disease?
Response: Unfortunately I don't see a bright light in the tunnel for Nigeria in the management and control of Sickle Cell at the moment but I am hopeful that we will meet up with the trends of the modern world. The advent of the internet, which has turned the world into a global village, will certainly play a huge part in the enlightenment and promotion of Sickle Cell affairs. It is sad that only 40-45% of the population have constant access to the internet today and it is those who have this privilege that can sometimes afford the care necessary for their children/family. The people I am however concerned about are those in the rural areas because they lack the needed education, knowledge and understanding of this disease and are plagued with misconceptions, superstitions and religious fraud. In a nutshell, reduction of corrupt practices in Nigeria will go a long way to sanitize the healthcare industry and the country as a whole.
This was by no means an easy "interview" to do for me or my mother. We have had to learn how to take things one day at a time in the hopes that somehow maybe it will get easier having to live life without my brother here. Continue to rest in peace bro, we miss you and love you so very much.
Thanks for reading and I hope everyone had a happy Memorial Day celebration.