Fighting this disease for as long as we have, has definitely helped us find and acknowledge those simple blessings that we might have missed. Many of those blessings are found in observing the wonder and appreciation children have for things I think most adults just pass by and miss everyday. For a Lyme Family, a simple outing you can all go to, and be a part of, is one! This week has surely had it's heartaches, but one of the biggest blessings was being able to go, as a family (which we never take for granted anymore), to our youngest daughters Honey Bee Choir Performance. Usually, one of my family members is not feeling well enough to go to an outing so there is likely to be someone missing. But this week we all got to be together and watch what I call a true blessing. First and second graders singing with all of their hearts to School House Rock Songs! Another blessing was being able to celebrate our eldest daughters 19th birthday, which was today. She woke up feeling pretty good, and had a semi-normal day. She, her friend and I got to go to lunch and had a pretty normal afternoon. A peace started to settled in my soul that was comforting, and unknown to what I used to know. Just as we sat down as a family and starting sharing the stories of the day, about half way through Bronte's symptoms started to flare up, and the reality that my other daughter had to start her IV's set in. For a split moment today I got to experience my life as I used to know it so many years ago. It is so foreign to me now, but I actually had moments of just laughing and relaxing knowing for the short time someone in my family wasn't feeling too much pain and I was grateful! As Bronte's symptoms flared up more, and my other daughter Isabelle was getting on her IV's, Bronte came over and gave me a hug. In her Bronte, sincere way, she hugged me and said, "Mom thank you for today and all you did." I hugged her back and told her how proud I was of her, and how much I loved her. She then choked up a little and said, "I'm 19 years old. I've been sick and fighting for 19 years mom." And, what a mother could only say to that without falling a part is, "I know Bronte. I know." My children have endured what no child or human being should ever have to endure, especially with all of the resources we have in the day and age we live in. It's inexcusable!!
I want every sufferer of this incomprehensible disease to know: YOU MATTER, YOU ARE NOT ALONE, YOU ARE SIGNIFICANT! I can't tell you how many times for years my family felt so alone, but when we learned we were not it made such a difference. YOUR pain is not silent, we have each other.
For those of you who do not have this disease, but are trying to educate and understand it, THANK YOU!