Of course that's easier said than done. The last several years of our lives have been in a constant holding pattern. Waiting and hoping for it to be over. I read, I research, I look for additional things to add to our routine that might help, even if it's in some small, minuscule way. I'm continually looking for ways to fix things. I admit I do much less of that now, but it's always in the back of my mind.
Now that we have settled into the "every-day-ness" of school at home and as things seem more "normal," I am starting to realize that as hard as things can be, we still have to live life. We can't keep waiting for a cure to be discovered. Or a sudden, unexpected recovery to sweep over her. As hard as the decision was to finally choose home school, I feel at peace now more than ever. It made me realize that coming to terms with what we needed to do was holding us back from living life. She is happier. She is able to take breaks as needed, sleep as needed, manage her symptoms as needed. I don't feel this constant battle of trying to do the impossible everyday. I don't know why it was a harder decision than saying yes to the first dose of the very serious treatment that IVIG is.
Live life. Those are just words. So many times I think of things to say to other people and I realize they really ARE just words. To follow the advice and actually live life is the hard part. I met another family this month with a daughter just beginning to go through the same as us. Same story and same age that it started. The family is at a very different stage, but I remember how it felt like it was yesterday. Time couldn't move quickly enough to get to the next doctor appointment and the next search for something that gave us hope - wait times were and still are ridiculous. It seems easier to live life when you have a diagnosis and a plan in place.
At Meghan's last cardiologist appointment, he asked us how we were doing. I told him things were good. I actually said normal. Then I qualified it with, well, not normal by a lot of people's standards, but our normal. Meghan swims, she does her homework, she can more often than not go to restaurants with us again without feeling sick. She can walk around the mall. All things we took for granted before.
I'm finding that we need to continue to work on acceptance and living life. Things most likely will always be a different kind of normal for Meghan but there are still so many things to enjoy in our lives. The hard part is convincing her. She lives it. I just observe it and feel it with my heart with the compassion that only a caregiver can know. I still explain to others what Meghan goes through daily and see that they often don't get it. They don't understand the scope of it and how it shakes you to your core. Especially those that see bits and pieces of her life as a happy kid who DOES smile and laugh and have fun. She puts on a brave face that fools people. Every so often, though, someone will observe some tears or pain she feels as she tries to conceal her inner emotions. A pain that knows anxiety and panic attacks are lurking in the background.
One thing to remember is that the world is constantly changing and evolving. Who determines what is the best path for anyone? What is normal? Do what you need to get through a difficult time and don't regret that it may not be what everyone else sees as normal. Don't stop searching and demanding and sticking up for yourself or the person you care for. Find your own normal. But don't forget to live life.