Written by Faustina Mensah.
It is very hard to pick up from where Vanessa’s Dad ended his blog because he said everything that must be said and heard. I will talk less about crisis because Vanessa is doing a great job sharing her lived experiences. Therefore, I decided to share some of my experiences that can be helpful to all caregivers, especially young moms like myself who are still figuring out how to navigate supporting their child with Sickle Cell Anemia (SCA).
“I will be a lactor (lawyer and doctor), and a princess”, yes, that is my 8-year old baby girl, Asempa, my boss lady (BL) and Madam! She responds when I call her madam, she has brought us so much happiness and oh yes, she is a handful too and has Sickle Cell Anemia (SS genotype).
We found out BL was SS, a few days after her 2nd birthday, the details, I will reserve for another time. It took me over a year to embrace our new reality and to date, I still have my episodes of pain and guilt anytime she has a crisis. It has been 6years and counting and I feel I became a better caregiver to my baby after I embraced our reality and refused to give in to my fears, anger, and guilt. I was able to do this after I learned more about SCA, paid close attention to signs of stress, and practiced positivity towards the condition.
After the baptism of recurring crisis episodes, I quickly realized that supporting BL goes beyond having the financial resources to rush her to the hospital when a crisis is imminent. Instead, be able to read the signs when they are lurking was the first step to reducing her crisis, so I read more about the condition and asked questions when in doubt. SCA, according to the experts is largely about strength management and knowing what stresses the patient out. As a mom of a child with SS, my most challenging experience with BL has been the ability to effectively manage her strength and stress. It took us a while to see her as a partner in achieving this goal, and we learned it the hard way that we had to believe her and be responsive whenever she complained of pain or discomfort. Countless times BL would complain about pain, but we felt it was just an excuse to stay home and not go to school, 9 out of 10 times there was some infection lurking.
On another front, I stopped playing superwoman and allowed every member of the family to be involved in taking care of BL especially during a crisis; once I did this, providing support became less overwhelming for me. During recovery times, for example, BL’s big brother is always available to play his catalyst role as a joker for his sister to keep her happy or encourage her to finish her meal. Although it took me a while, I found value and overcame bitterness through positive associations with people who understood my predicaments. With this, I drew inspiration from Madam Marian, who has 2 older children with SS and is the most positive woman I have encountered. She is always available to encourage me and share her coping strategies that I found helpful.
I can go on, but in summary, keep your SS child happy, do not take their crisis for granted because the pain they experience is not only excruciating but also life-threatening – this is pain that one cannot sleep through, pain that has the potential to shut their bodies down! As a Christian, I am keeping my faith alive that God will heal my baby girl, but in the meantime, I pray that there will be more medical breakthroughs around a cure for SS. That notwithstanding, be cheerful, remember that you radiate the hope, faith and strength they need to embrace their reality. Do not get lost moping about the illness; enjoy your gift of parenthood.
Finally, I entreat every reader to consider everything Vanessa shares through this blog especially when we must make that judgment call about childbearing or parenting or supporting caregivers who have relations with SCA.