I had to decide what to say. This was the moment I had thought about and wondered how to handle the situation. I would have to decide whether to remain quiet about Riley, only telling those on a strict need to know basis, or to speak freely, without reservation.
I knew that to be open and honest, would mean many things. It would mean opening up our family to ignorant or rude comments, occupying a “pity” status to in some one else’s eyes, or imposed limitation on Riley, not by her condition, but by what other’s think her condition means.
On the other hand, to speak openly provides a forum to share and educate. The fact is many people in the general public, unfortunately including a number of medical and health professionals, are misinformed about sickle cell disease. Sickle Cell is referred to as the “forgotten disease.” Sickle Cell is a rare disorder, with roughly 1,000 US diagnosed cases in newborns annually, and those primarily diagnosed are ethnic minorities. The reality for many people is that they are not aware of the severity of the disease. Many will neither know someone with SC or be affected daily by this debilitating illness. Complicating matters, during times, one can appear “normal” while the damage to vital organs is continually occurring.
The deciding moment came when Riley was 3 mths old. Ironically, we were preparing for her first visit with the hematologist. As I was getting ready, the phone rang.
Me: “Hello”
Friend: “What are you doing?”
Me (with a million thoughts running through my head): “Getting ready to go to the doctor.”
Friend: “Ah, is the baby sick?”
And, here it was, the moment, I dreaded.
I simply said, “No, we are going to see a specialist. Riley has sickle cell.”
As the road divulged, I chose our path.
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