Updated: Aug. 3, 2016
Originally Published: Jan. 7, 2016
In various aspects, we find ourselves fortunate. Our family faces minimal medical appointments because, in our case, there is little that medical professionals can accomplish. We are not continually navigating the hospital environment; our child is spared from exhausting treatments, and we do not witness prolonged suffering in the name of recovery.
Our time with our child, Alex, is enriched with the understanding that it is limited. This awareness transforms every moment into a cherished gift. The absence of treatment options has, paradoxically, cultivated a sense of happiness—one that often feels deeper than before Alex’s diagnosis. We have developed a profound appreciation for the small joys in life, recognizing how fortunate we are in numerous ways.
Yet, I find myself feeling a tinge of envy toward other children battling different conditions. I envy their potential for recovery. I long for the hope they possess and the treatments they are able to undergo. I feel remorse for these feelings; I would never wish the trials they face upon anyone. The agony of losing a child is unimaginable. However, I would trade almost anything for the opportunity for Alex to have a chance at life. Since that is unattainable, I commit to making each day meaningful.
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In summary, while hope can be a double-edged sword, it also propels us to savor every moment. Our journey may be fraught with challenges, but it also offers profound lessons in gratitude and resilience.