The Ignored Defect

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Imagine learning your child has been in a terrible accident. Doctors all over the world tell you your child is terminal. According to these doctors, your child’s life is no longer valuable, your child is, “incompatible with life.” These same doctors turn their backs on your child and leave you to grieve your living baby.

Now imagine learning that a few survived the same diagnosis. So you dig. You read and read. You question those that have survived. And then you figure out the common factor in survival, something no doctor has done or even tried to do.

But you have no way of knowing if your child has that common factor. You have eight weeks to not only find a surgeon to treat your child. But you also have to figure out multiple ways to save your child, in the event that your child does not have the common surviving factor.

Now, knowing all of this, imagine you only have eight weeks left with your child and at any moment your child could die unexpectedly. So you spend as much time as you can loving your child, giving your child everything you have to give, all the while using the rest of your time in study.

Can you imagine the fear? The guilt? The panic?

“What if I can’t figure this out? What if my child dies right before I solve this puzzle? Am I doing enough? Am I spending enough time with my child? What if it doesn’t work? Am I wasting precious time with my child? What if my child dies before I get the chance to say goodbye? Can I do this, can I save my child?”

Does your chest feel tight? Because mine does. And this, this is my life. A constant struggle between pure joy and love for my daughter and constant growing, gnawing fear.

Will I ever know if I gave her enough time? Will I be able to save her and make the time I sacrificed with her worth it? Self-doubt, fear, and guilt are my constant companions as we get closer to Brielle’s due date.

Tonight I asked David, “How do I live without her? If I save others with this diagnosis, but not my daughter, how do I live? She’s all I want. This is all for her.”

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