A lost parent
As i sit here typing this message I'm crying; trying to stay focused. My daughter is 18 months old living with SCD. It tears my heart to read the post of people actually living with SCD. Im a parent living in a world of not knowing what to expect for the life of my baby. She's so sweet and loving and I cant think of what this life will bring, as NO one deserve to endure this type of pain. I have joined a support group for parents caring for kids with SCD, and its almost more painful to attend. Parents sitting in a circle talking about how doctors and hospital staff treat them as they visit ER with their sick children, and how it is to attend to a baby that can not explain what's hurting or doesn't what to be touched. I am very blessed thus far my daughter has not experienced any pain crisis that required an ER visit. However, I am preparing myself for her 18 month visit. My daughters eyes have turned noticeably yellow within the last week, but my doctor has explained its due to a break down of her red blood cells. I'm a scared parent... As a parent not many resources are available. As the result of the current economic situation the United States is faced with I understand that Sickle Cell Foundations are not receiving the resources needed to stay in operation. This will result in the one place that provides informative material and resources will no longer be. How will we make it??? As a new parent dealing with a new experience my Sickle Cell Foundation was of great support that carried me through that initial shock. Please help and provide positive feedback on how a parent can make it though the most hardest time in my life. I have no tears left.....
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I wish you the best. Regards from my mother. She feels your pain.