Really? Really. As if having one serious chronic disease isn’t enough, what makes God say, “Hmm…Let’s give this poor, innocent child, another chronic illness”?!
In this case, I’m talking about sickle cell anemia (SCA) and von Willebrand disease (VWD). Both chronic, both can be deadly.
After reading an article about an 11-year-old girl who is living with both of these two genetic illnesses, it makes me question why this is happening. Don’t hate me, but I’m not too fond of the belief that “God never gives us more than we can handle.” Maybe you’re a fan of that mindset, but I just can’t. It makes me too sad.
Instead, I have to think that we’re all just human, and things happen, NOT for a reason unless WE give them reason. Well, maybe. I’m just trying to rationalize how a sweet, innocent little girl can “luck out” in having these two illnesses.
But instead of blaming God and the Universe and being angry with the rest of the world, this young gal made the decision to put bitterness aside.
She basically grew up with SCA and VWD. Her parents kept taking her back to the specialty clinic for treatment and care, and eventually, the child felt so positive about herself that she refused to give in to self-pity.
She fought back by hunkering down at school. She studied hard when she could, and she made straight A’s. They worked tirelessly together to manage these two hereditary diseases, and it’s working.
But hey. It’s not all about the doctors here. No… I give a lot of credit to the girl’s parents!
Without them, there would be no doctor visits, or school, or anything, really. To be able to raise your child with a kind heart, who wants to study for when/if she might feel well enough to give back to others… and does, is an amazing thing.
Oh how I applaud any and every parent who is able to love and treat their chronically ill children with love and respect, in order to help guide them to find their own way to happiness.
Are you a parent of a child who has sickle cell? Please don’t beat yourself up. There’s help out there through talking with other parents in your same situation.
Do you have child-rearing tips for other parents who have children with sickle cell anemia? How did you manage—especially if you are divorced. Please post on Patient Worthy. Remember: You are not alone. Your voice matters.