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Why I No Longer Feel the Guilt of Passing My Disease On to My Children

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Since before my sons were born, I have carried the guilt of passing Fabry disease on to them. I have cried more tears than I believed possible. I understood that Fabry disease would be hard to live with, but I never planned for the guilt. How could I have prepared for that?

When my babies were babies and they would cry like babies often do, I would ask myself, “Are you crying because of Fabry’s or because you’re a baby?”

When my 4-year-old son asked if he could wear sandals over sneakers so his feet would only hurt “for one step,” I understood that I had waited too long to start therapy. I held back the tears as I nodded my head, “Yes.” He would have to start enzyme replacement therapy. My baby would have to have infusions from now on, until they found a better way. For every infusion I have prayed to God to please find a better answer. I have also thanked God that an answer exists.

I carry my guilt with me wherever I go. It is my constant shadow.

Finally, I have decided I must release my guilt. It is a burden that I can stop weighing down on my children. I would not have chosen to give Fabry disease to my children, and I do not want different children. Fabry’s is part of who they are, and they are perfect.

Today, I release my guilt. I am not guilty of giving this to them. I did not wrap it in a bow and make it a present. It is simply part of who they are, the way it is part of who I am. I love who I am and I love who they are. Releasing my guilt will take the weight off of their shoulders, as they are constantly letting me know “It’s OK, mom.”

It is OK. We are all OK. We are beautiful. We are a family. I release the guilt and look to the future. I am full of hope.

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Getty Images photo via SomeMeans

Originally published: January 10, 2018
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