Life Through a Different Lens - The Rare Perspective

I can remember being a new mom, back more than 22 years ago and worrying about every little thing that happened or may happen. I can remember laying in bed at night and wondering if I was enough, if I was doing my best. There were nights of watching them breath and praising God for letting me be their mom and praying that I would do my best with these precious boys He had entrusted me with.

Back when I was first a mom so many little details mattered - I wanted them to go into the world looking like I took good care of them. I had them in cute matching clothes that weren't ripped or stained, teeth brushed and hair combed. We were living on one income so I am not saying a spent a lot on all that, but I really worried about how our boys looked to the rest of the world and what that would say about me as a stay at home mom and how I was doing.

As both children had complicated, and very serious diagnoses by middle school, I learned that very little mattered to me other than their health. This rare disease journey that I have endured with my children has put so much in perspective. There is a common phrase - "Don't sweat the small stuff". Nothing will put that in perspective more easily than having two children with illnesses that require specialized care that you have to fight for. Holidays don't go off as planned? Oh well...we will celebrate another day or another way. Dinner plans did not happen as intended? There is lunchmeat or PB&J in the kitchen - we will eat.

The things that now matter are the drug shortages that impact getting the emergency medication that our youngest would need for a serious injury and illness. Only one pharmaceutical company manufacturers it. Because there is little profit on this medication there are times they cut production for medications that bring in more money. We need to always be sure we have extra of that in case we run into one of those times. Our oldest has a serious lung condition. When he gets what is a common virus for some it can land him in the hospital if he is not proactively taking care of himself as soon as he feels off. These are the things that now matter.

I am not saying that I am perfect in this. I am still human and there are small things that get under my skin. But if I do not catch it quickly, I have a strong support network that reminds me that this is not where my energy is needed. I wonder, for those whose life is not impacted by the stresses of a rare disease or other larger stressor like this, how much happier their life would be if they really did not sweat the small stuff. I wish I had learned that lesson before I was forced to.