One of the Hardest Questions, Rare Disease Mom

Last week I had a doctors appointment, get this - for myself. It is so important when you are a caregiver to continue to take care of yourself both physcally, mentally and spirtually. As I set at the registration desk so many of the answers are automatic, name, address, phone, emergency contact, etc... Then came the one that stumps me everytime....Are you employed?

I will say that this year that question has become even more nuanced for me. You see for years, I could say stay at home mom. Anyone who knows me at all, knows that homemaker is not a title that suits me at all. I am not one to keep house very tidy, though it is much easier without toddlers messing things up the second they are put away. I keep our house clean, but it is not a title that has even been one to define me. And I am not disparaging at all those that fit into that group at all - there have been many times when I wish I was better at that. But I am the mom whose kid requested grilled cheese from mom when he came home from college and that is about the level os homemaking that I have embraced from the beginning of this journey.

I could say unemployed, but that does not really fit either, as I have chose this life of volunteering for nonprofits and currently am volunteering at least full-time some weeks at something I love. I feel like checking unemployed is for those who have had a season in their lives when they were looking for and unable to find gainful employment for themselves. So, while I am not employed at a job where I bring home a check or contribute financially to our family that is not where I fit.

I could check either part or full-time employment, as I am somewhere between those two, but then they would expect that I have a W2. It would be expected that I was contributing financially to my family's well being. Most weeks I am working full-time as Executive Director of Adrenal Insufficiency United. It is what I think I was meant to do at this point in my life - I go to bed most nights excited for what I will do the next day. How many can say that about their employment?

So, the woman at the registration desk asked, are you retired? That is what I had previously checked, apparently. I do not know at what point I had decided that was the correct box to check for the time I was at, but I must have thought it made sense then. Next month marks 22 years since I was in the workforce getting paid for full time work, so in many ways I can see that. But again it does not quite do justice to what I am currently doing.

I sit here and I ponder the form...am I employed? Yes! A resounding - Yes! I am exactly where God wants me to be, exactly when He wanted me to be here. I am impacting lives of people with an often misunderstood condition, connecting them with others who understand, working to make sure they have life-saving information. Does it hold value in most of the ways our society wants to define value? Probably not. But I have come to the age (not retirement age officially yet) where how others define value does not matter. What matters is that I am being my authentic self - doing what I was meant to do.