Guilty? My Fault?
These questions often come through my mind being a sickle cell patient that has passed on the condition to his very own daughter.
While dating someone that has sickle cell either trait or the full blown condition has never been an issue with me (An issue that I will explore with my next blog post). The question of dealing with the consequences of having a daughter that is the product of me having sickle cell and her mother having the sickle cell trait often has me contemplating various thoughts.
Was it my fault for bringing this condition to another person especially my daughter? should I have been more mindful of the fact that another life would have been brought in the world affected by the condition?. The mother of my children has sickle cell trait and I have the full blown sickle cell condition which means theres a 1 in 2 chance that our kids would have sickle cell disease with the other 1 in 2 chance that they would have the sickle cell trait. Which resulted in my first born son having sickle cell trait and my daughter having the full blown sickle cell disease.
There has been many instances especially before the age of one where My daughter was in and out of hospital and I give great thanks to the fact that the mother of my children was as strong and as persistent as possible that my daughter has the health she has now as she played a very significant role in my daughters improving health.
I must also say that due to breakthroughs in medical treatment and my daughter being on Hydroxyurea she has not had a major sickle cell crisis since, but still has issues with her tiredness and fatigue.
However it brings back to the fact that even though she has not experienced a period of ill-health since she was one (she is five now) relatively now sickle cell crisis free, however she still has sickle cell disease and has not been cured. This here lies the issue I often have to live with, while sickle cell is not always a death sentence as evident through various patients living longer and productive lives. I’m at odds with my own personal demons of passing the condition on to her. No parents wants to ever see their child in pain and suffering and I thank God for the fact that she is alive now in near perfect health but a part of me thinks I am to blame for her circumstances.
On the flipside my daughter Angel, often known as the boss because she basically runs the show, well in my house anyways. She is sweet, caring, beautiful and very bossy shown in the way she bosses me and her older brother about and I wouldnt change anything about her at all. She Is the perfect example of Gods design and I often realise that even though she has a condition it does not define who she is, she is so much more than a label and is living life testament to that and quite possibly reason why she was brought to the earth, to be a blessing to me , her mum, her brother and the various people she meets in the world now and the future.
Now comes the more sombre thoughts, what if she has a relaspe? what if another serious crisis is around the corner what if she gets really hurt? These are questions I ask myself regularly is it fair that I pass all this to her? Is it fair that she is to blame for something that I have? Often I lay up restless at the fact that my baby girl may actually see a return to the pain she suffered before she was one. That terrifies me more than anything and for certian would break me.
The guilt of knowing I passed this condition crosses my mimd more often than I can imagine however she is testament that living with Sickle Cell is not doom and gloom hence her very active and joyful life, and with regular support, help, guidance and her regular medication hopefully she will stay in perfect health.
While we can’t predict what will come tomorrow, however as parents we can ensure that she lives to enjoy today. She has proven that sickle cell especially for her is’nt a crutch on her life and her strength and courage and continued smiles will only inspire me, this cause and the sicklekan movement to campaign till our dying days for a global cure and better treatment for children like her and others affected by the condition daily to battle Sickle cell and win. Trust me we will.
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