In the past three years, I’ve often found myself responding to family, friends, and co-workers with the words, “We’re okay.” With a son facing significant medical challenges, a full-time job, and a preschool-aged daughter, I frequently receive the same well-meaning question: “How are you managing everything?” My automatic reply is usually “We’re okay!” or “I’m managing!” This has become my go-to response, while internally, I chuckle at the disparity between my words and my reality.
The truth is, I haven’t truly felt “okay” for quite some time. How could I? How can I claim to be fine when I never know when my child might need yet another “routine” surgery? Anyone who has seen their child on an operating table knows that the term “routine” offers little comfort amidst the anxious thoughts that race through your mind.
How can I possibly feel okay when my little one has undergone multiple surgeries, countless procedures, and has spent a significant part of his early life in a hospital bed? The unpredictability of his health means I often find myself praying alongside the rhythmic sound of a ventilator, caught in a whirlwind of fear and hope, wondering what tomorrow might bring.
Yet, amidst this pain and uncertainty, I find moments of joy that remind me that, in many ways, I am okay. Despite the fears and the exhaustion, our lives are rich with love and laughter. We have learned to cherish each precious moment we experience together. Every milestone is celebrated with genuine joy, and every hug from my child is a reminder of what truly matters.
So, what do I want to convey? It may not be accurate to say I’m completely fine, yet somehow, I am navigating this challenging journey and finding my way.
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In summary, while the path of a special needs parent is fraught with challenges, it is also filled with extraordinary moments of love and joy.