As 2015 comes to a close, it brings reflection.
Reflection on the year that has just flown by within the blink of an eye, and yet
so slowly at the same time. It is a very odd combination and one you truly
understand when your child has Heterotaxy.
One year. What does that truly mean? For most, it is filled with family fun and a carefree attitude. For us, it was deciding to move across the country and subsequently having to find a new care team for our daughter, Violet. It was finally taking the plunge to remove her feeding tube after having it for nearly three years. It was giving hope to newly diagnosed families and making connections. And it was, unfortunately, watching friends lose their children due to Heterotaxy-related complications. A year can have so many different twists and turns that it can be hard to plan for the future, even just the next year. Living in the moment is something that many of my fellow Heterotaxy parents abide by because we are afraid to make plans for a child that may not be there.
But I won’t do that this year. I can’t do it this year. I am deciding that it would be healthier for me to finally start looking forward to the future. We will plan first for Violet to go to school in March once I graduate school and am working. We will plan for a vacation in the summer, perhaps to Disneyland or back home. We will put her into preschool in the fall. We will buy presents all year long for Christmas. But what I won’t plan for is what “may happen” in regards to her health. We deserve to have a year where our first thoughts are not on a diagnosis, but rather how well she is doing and rejoice in that.
One year. What does that truly mean? For most, it is filled with family fun and a carefree attitude. For us, it was deciding to move across the country and subsequently having to find a new care team for our daughter, Violet. It was finally taking the plunge to remove her feeding tube after having it for nearly three years. It was giving hope to newly diagnosed families and making connections. And it was, unfortunately, watching friends lose their children due to Heterotaxy-related complications. A year can have so many different twists and turns that it can be hard to plan for the future, even just the next year. Living in the moment is something that many of my fellow Heterotaxy parents abide by because we are afraid to make plans for a child that may not be there.
But I won’t do that this year. I can’t do it this year. I am deciding that it would be healthier for me to finally start looking forward to the future. We will plan first for Violet to go to school in March once I graduate school and am working. We will plan for a vacation in the summer, perhaps to Disneyland or back home. We will put her into preschool in the fall. We will buy presents all year long for Christmas. But what I won’t plan for is what “may happen” in regards to her health. We deserve to have a year where our first thoughts are not on a diagnosis, but rather how well she is doing and rejoice in that.
All of the changes we faced this past year has made us a stronger family and we look forward to 2016 being just as prodigious. We wish all of our Heterotaxy families a happy, prosperous, and healthy year!
Danielle Leppo ~ Mom to Heterotaxy Hero, Violet
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