What did you learn about your husband's experience living with sickle cell? How did you navigate being a caregiver to someone with sickle cell?
“I began to learn about his background with sickle cell, and that he came from a family where all four children had sickle cell disease, and the father had sickle cell, and the mother had the trait. So, my husband was born in 1938. So, you know, at that time, they really didn’t know anything about sickle cell, and then the parents weren’t really educated, because after my husband, there was a set of twin girls born that had the disease, and then they still weren’t educated, and then after that, a brother was born, all with sickle cell disease. So, he was just telling me about the experience of growing up in a family where all the children were impacted. So, you know, he’s sharing all of this with me, and I’m learning about him being the oldest, the impact, and that sometimes all of the children will be in the hospital at the same time. And they lived in the projects in Chicago, so they were struggling, you know, and that whole struggle of the African-American family, and then you have a family that has children that have something called sickle cell disease, and how the mother really became an advocate for these children, because she had to, you know, she learned a lot, and was able to really connect with the doctors to get more support than she normally would have. So she was my mentor, his mother, and I learned a lot from her in terms of how she dealt with someone with sickle cell disease.
So the mother was my shero, but my husband was my hero, and because of his strength, being the oldest of four children, and witnessing the devastation that had, that impacted all of them, my husband being the last of the children to pass, and watching his siblings go before him, you know, that was a lot. But Walter was, I call him the ultimate warrior, because of all that he went through with the impact of the disease, and they weren’t being called warriors at that time, but I look at him, you know, we need to do a piece on the original warriors, you know, those that are in their 50s, 60s, 70s, 80s, and beyond, that would be a wonderful story, because they are the original warriors. But I learned so much through the experience, and I took every situation that he was confronted with medically as an opportunity for me to learn something that I never knew before. So I looked at it as though I was taking a class, and I learned something.”
