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Saturday, April 30, 2016

Living in fear.


Most of the times I feel that being a mother of Children with Sickle Cell Anemia is like living in fear. And it feels this way because this disorder is very unpredictable, pretty much no matter what you do to stay healthy, anything can trigger a minor or major crisis. Since environmental changes, to weather, mood, stress, sadness, excitement, happiness... And the list goes on and on.
We've been very fortunate, despite all. Most children living with SCD that is my children's age have been through more hospital stays than the numbers of months of life they have. Maybe this is because we chose to fight for what we feel is right for our children now and in a long way. My only regret is sometimes taking longer to move forward and fight with all we have on hands to get where we need to be. 
It saddens me to see and read how much struggles many families goes through  every day, and still not many people know or care about this Disorder that is considered the Second major hereditary Disorder existent.
There is just so much misunderstanding, judgment and mostly discrimination against it. I still remember the first time we went to a Hematology Clinic and both the doctor and the Social Worker telling me: "You know,  Sickle Cell Disease is a black disease!"
At that time everything was so hard and confuse in my mind, my heart was heavy and I didn't realize how bad those words were and there was a discrimination profiling.
It is hard to put into words how much you need to be strong and have faith that God empowers us to go through each day.
You have to be in a nonstop search. And yet deal with the fears of the unknown and the guilty of passing it to your most loved ones.
Most of the times it feels like you are constantly walking on egg shells.

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