Atypical Aunt Life

Obviously, I do a lot of things a typical aunt does, but I also do some out-of-the-ordinary things. When I found out about my sister being pregnant with Nathan, I was so excited. I would look up things to do with your niece/nephew on the internet and constantly look at baby clothes for him and same with Noah. Little did I know that fun places to go, and clothes would be the least of my concerns when they entered this world. When I found out about Nathan’s condition I researched neutropenia and learned all about it. Neutropenia is rare, but a lot of kids grow out of it and it can be managed. I spent a good while researching precautions to take while with Nathan and what to do if he had a high fever. But for Noah, it is a different story. Noah’s condition is very rare, and it is somewhat new. When my sister told me about Noah’s condition I spent hours researching ALD and what that meant for Noah. I can say, without a doubt, I did not know the human body went into such depth and detail. I still to this day research everything about the disease, because with this disease you don’t know if something minor could actually be a symptom of ALD. I have joined support groups for their rare diseases and have even joined conference calls with parents whose children have the same disease. My sister and I have spent hours together at times, researching everything about these diseases trying to piece together a puzzle to a world we really have no idea about. A lot of nights we have been spent doing this, for a long time it was what me and my sister called our “quality time” together. My sister is my best friend, we have spent nights crying, laughing, and sometimes both at the same time. I always told my family that if I could go back and change my major to something that would help me learn about my nephews’ conditions that I would in a heartbeat. One always thinks that their family would never be put in a position like this, that these rare diseases only affect the people you don’t know, I was this naive once, and I learned the hard way that it can change your life forever. Before my nephews came into this world I was so excited and really only thought about how much adventures we would go on, I never thought that they would come into this world not healthy. So the atypical aunt life goes like this: praying that the next doctor’s appointment for my nephews goes well, researching my nephews’ conditions and related symptoms, being aware of every person’s health status that are around my nephews, and being the best supporter that I know to be for my sisters family. Is it the best case scenario? No. Could it be worse? Definitely. One thing that my family does know is that as long as we stick together everything will be ok, and this too shall pass.