Parents with sickle cell children go through so much emotionally, mentally and financially. The pain they feel when their kids are going through crisis can not be described but they have to put on a brave face for them. They can't appear scared or afraid because they need to be strong and make certain they have everything they need before the the doctors are called. My mom has had to care for 2 children with sickle cell and I can tell you that is a 24 hour job; no two "sicklers" are exactly the same so where one may experience stomach crisis, for the other it could be their joints. That was the case with my brother and sister. A couple of years ago, both my brother and sister were going through crisis at the same time in the middle of the night and you can only imagine my mom's state of mind. My sister was having chronic stomach crisis and was so uncomfortable and my brother was having intense joint pains. My elder sister and I had to help out obviously, watch over them and do whatever we could to ease their pain till we could take them to the hospital in the morning. It was an emotional experience I would never forget in a hurry.
You can't blame a parent that is overprotective of a child with sickle cell because anything could set off their crisis: from stress to the common cold. They worry when the kids grow up and go off to college, they worry when they want to go hang out with their friends, they worry about whether or not they are staying hydrated, taking their meds, sleeping through the night, whether they are stressed or not, the list is endless and it doesn't stop, no matter how old they get. Then there's the doctor visits, the blood transfusions, the endless drugs, all this costs money and often times, there are families that can't afford all of these treatments and medication. Until my brother passed away, he had to have regular doctor visits, stay hydrated all day and learn to keep his stress levels as low as possible because he had a full time job that was stressful. My sister needs regular blood transfusions and constant monitoring because she has suffered a partial stroke and used to experience bad tremors along with seizures. Its a full time job just being a parent but then to add sickle cell or any health issues to it, is by no means easy and my respect and love goes out to all parents who have this as their reality.
Are you a sickle cell parent? How are you coping? Please share.
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