D-Day is a term often used in the rare disease community as an acronym for Diagnosis Day. It typically has a negative connotation and it’s a day we often dread each year. It’s a day that will forever be etched in our mind.
Jordyn’s D-Day was October 2, 2015. She and I were on our way to my cousin’s wedding that Friday evening when I received a call from Jordyn’s doctor. She told me her genetic test came back positive for Alexander disease. She told me not to look it up online and that we would discuss it at my daughter’s next neurology appointment. I parked the car in the parking lot and just cried. I cried harder than I can ever remember crying before. We were told she had 3-5 years to live. We were told she would lose skills at a rapid rate. We were told to hold on to her as much as we could and to wish for the best.
Thankfully, survival mode kicked in and I realized that wasn’t going to be how her story played out. I sought out support groups on Facebook and came upon a group for families faced with Alexander disease. I learned of a research study going on in Philadelphia and a group in Wisconsin that was researching Alexander disease in mouse models. I felt a deep sense of hope. We now travel to Philadelphia yearly to take part in this research study. The doctors and therapists have helped me to see that better care is out there.
We have been on this journey for almost 6 years. It doesn’t seem like that long, yet it feels like a lifetime. When we were thrust into this new, rare disease world, I struggled to find belonging. I didn’t feel like anyone understood how I felt, even those within the same rare disease. Each rare disease is so different and even from patient to patient within the same disease. As time has passed, I’ve slowly begun to heal. Some days are exceptionally hard, but most days are good days.
The grief is always there, but it’s manageable. Time has not necessarily made things easier, but time has helped me heal. I’ve learned that joy can be found in even the smallest moments. I’ve learned that writing helps me process the grief. I am passionate about building a community to help other families move past D-Day as my family has. Your outlook on your current situation can make all the difference in your happiness and how the situation is handled. How will you move forward? How will you choose to make every moment count?
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