What can i say - i am a worry wort
I am blessed to have a beautiful baby girl, that has Sickle Cell Disease. Why so overwhelmed you may ask. No it's not mother hood. Its the fact that i feel robbed! I always dreamed of being the cool mom who shops and hangs out with her kids. That we will share everything, now i have to live outside of my fantasy dream. We do not share this disease. Which means i was robbed of the one job a parent has, protecting their child from danger AND PAIN!
I am overwhelmed because i dont know what to expect. I dont know how to properly plan and assist her when she needs me. i dont know what shes going to need. I try getting information from people that have Sickle Cell by watching video blogs on YOUTUBE but truth is i can't. Five minutes into it i can barely see the moniter due to the waterfall of tears on my face.**What can i say- i am also a cry baby! There all about the pain. How it sucks, being hospitalized, taking meds. I need more information so i can help my child. I want to be there for her, but how? What will she need me to do, to say?
Am i the only parent who has these feelings? I feel lost, hopeless, robbed, angry.
If you have Sickle Cell- what is helpful from your parents? how can i help her in the later years? Whats to come?
please help!
Respectfully,
Shay in New Jersey
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