To prepare herself for taking care of her child with sickle cell disease, Dwijnie started asking herself: “Where can I find the information, the services and all things” she would need to ensure that her daughter had the best possible care.
She wanted to be as prepared as she could be, so she started back in the hospital where her daughter was diagnosed.
There she met medical professionals who could not only give her resources to learn more about sickle cell disease, but also to process what it meant for her daughter’s life in the future.
When she worked with her daughter’s care team, she also received choices when it came to her medical treatment. She never felt under pressure to take it one or the other and chose the one she was most comfortable with.
“Fifteen years later we still go with that,” she said about the treatment that her daughter worked well throughout her life.
She also learned that with sickle cell disease there will be good days and bad days, and she has to prepare for that.
“When she was younger, I had a bag with things to stay in the hospital in my car,” she said, and noticed that a phone call could come from her daughter’s school at any time and let her know that she should come and take her to the hospital.
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