Having a child with any major chronic illness is one thing I know no parent can really ever be prepared for. It doesn't matter how many books or articles you read , precautionary measures you take or advise from parents in similar situations you get, truth is you never truly know or understand how to prepare for a child with sickle cell.
When my brother was born and it was discovered that he had scd, I'm sure my parents thought they were well prepared by the time my sister came around. That wasn't the case though because my sister had very different symptoms and complications from my brother. I also know that it was not their desire to have another child with sickle cell especially after seeing what my brother had been going through but after terminating one other confirmed sickle cell pregnancy after him, they were not comfortable doing that a 2nd time. Had they done so, my sister would not have been here today and upon making the decision to have her, they trusted that God would always take control where her health was concerned. He has remained faithful even 26 years later and she is healthier today than she's ever been thanks to the good medical attention she has gotten and still gets now.
Preparing for a child with sickle cell will take not only emotional and mental preparedness but also psychological. This is a disease that almost requires round the clock supervision for your children and the constant worrying over them does not ever go away even when they are grown enough to take care of themselves. In general, taking precautions with sporting activities, during the hot and cold seasons and with academic performance in school is a given; one that parents are usually ready for. But how does a parent emotionally prep for a lifetime of constant worry and fear that something may go wrong when you are not there? Besides feeling sad, parents may feel angry and/or guilty for the condition of their child but these emotions are normal and thankfully usually temporary. They quickly need to see the importance of understanding this disease and recognizing early symptoms of serious complications.
Emotions of fear, sadness, anger or disappointment need to be discarded and replaced with strength, attention to detail and perseverance if you are to care for your child adequately. Mentally, again you need to operate from a place of strength otherwise you will buckle under the constant pressuring need to care for your child. Psychological preparedness may be the most challenging of all because once you witness firsthand all of the infections, complications, crises and hospitalizations your child will go through, it is going to take all of your will power to keep you from the self blame you are likely to experience. My mom dealt with this too but she quickly realized that this type of thinking did nobody any good ( not her or my siblings) and changed nothing except disturb her ability to function and be present as the primary caregiver to my sister and brother.
It's a lot to have to deal with as a parent but you mustn't be overwhelmed. There is help available so find it and know that you are never alone in this. May God continue protect all your beautiful children, Amen!
Always Love 💘
ibogirl
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