In many respects, we are fortunate. Our child, Ethan, does not require frequent doctor visits, as there is little that medical professionals can do about his condition. We aren’t navigating the maze of hospitals, our son isn’t subjected to exhausting treatments, and we don’t have to witness his pain in the pursuit of recovery.
The knowledge that our time with Ethan is limited has allowed us to cherish each moment we have together. This awareness has transformed our outlook on life, granting us a deeper appreciation for the blessings we do possess. Remarkably, this experience has made us happier than we were prior to Ethan’s diagnosis.
Yet, I find myself struggling with envy. I envy the children who have a fighting chance at life. I long for the hope they experience and the treatments that could potentially lead to healing. It pains me to acknowledge these feelings, as I wouldn’t wish the hardships they endure on anyone. I can’t imagine the grief of losing a child, and I wouldn’t wish that anguish on anyone. However, I would give nearly anything for the opportunity for our son to have a chance at life. Since that is not an option, my focus remains on making every single day meaningful.
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In conclusion, while hope can often feel like a double-edged sword in parenting, it also serves as a powerful motivator to make the most of our time with our loved ones.