body as she continues to grow and gets older.
Why this is so important:
- So she will understand her limits and/ or stressors, physically and emotionally as these could trigger a crisis
- So she will know when her body needs to rest
- So she will know her pick-me-ups / feels good to keep her in good spirits(music, painting, yoga)
- So she can do the things she enjoys
This brings me to my next point. Having a Black child with a blood disorder, it’s almost as if she was immediately put into a box. After her birth screening, I was told that my daughter should not participate in any sports, do activities outdoors like camping or swimming, and a list of other limitations that would keep her in a box. When in fact, it’s good for her to stay active and participate in different activities (being mindful of course).
I want to stress that it’s so, so, so important to find a hematologist who doesn’t just look at your child as another Black child with sickle cell anemia, but a hematologist who takes the time to learn your child, tailors a complete and proper treatment plan for your child, etc.
If you’re in search of a culturally sensitive doctor, click here.
Every child is different. Every child’s body, symptoms and triggers are different. They should each be treated as such. I’m teaching my daughter that sickle cell anemia does not solely define or put excessive limitations on her. She absolutely can, and will live a full life.
RELATED: What Is Sickle Cell Disease?
This is how we maintain normalcy in my daughter’s life :
- Tapping into her interests and hobbies, like tennis–she’s two years in!
- Keeping her socially active. My daughter is a brownie in Girl Scouts and loves every minute of it.
- Encouraging her to try different activities
- Encouraging her to just be –give herself some grace through it all
- Introducing healthy practices into her daily life, like drinking plenty of water, eating lots of fruits and veggies
- Encouraging her daily to implement self-care in her routine
- Creating an environment where she feels like a kid, not a kid with a blood disorder (ex. Letting her play tennis, going to the outside pool) Mom tip: bring plenty of water bottles, sun hats, sunscreen and umbrellas. Take breaks from the sun, like going indoors to eat lunch.
Some other tips for raising a child with sickle cell anemia:
- Learn how to feel/check your child’s spleen for enlargement (blood may get trapped in the spleen, block blood flow and it can cause a dangerous drop in the circulating blood volume)
- Encourage your child to drink plenty of water/stay hydrated
- Be mindful of extreme temperatures/environments
- Make sure your child takes his / her daily medications as prescribed
- Find a qualified, culturally sensitive physician
My daughter is a living example of maintaining normalcy with sickle cell anemia. It is possible to both, live a full life and have sickle cell anemia.