Decisions Made

A woman contacted me through Facebook the other day wanting to know a bit more about Sarah's story. Before I shared any of it with her I asked her what her experience was with NMO. She told me that she worked for the Guthy-Jackson Charitable Foundation, and that her 9 year old son died from complications of NMO after a 5 year battle with the disease. (So, there goes my theory that the 32% of people who die from this disease are elderly.) Not being 'friends' with her on Facebook I tried my best to check out her story, and found myself in tears looking at her Facebook pictures. Her life story showed her family as it progressed through this disease, and how devastating it can be. I am so scared that this will be Sarah's fate. I am scared that the pain around her ribs is something other than her bed being uncomfortable and that it is the beginning of a downward spiral of respiratory failure. I am afraid that her continued multiple nighttime bathroom breaks are the beginning signs of bladder problems that are common in NMO patients. I just have a bad feeling about this whole disease. A bad horrible feeling that is sitting in my gut. I am scared to death that my days are numbered with her. I know that is terrible to say, and I hate even writing those words down, but this is my reality right now. I have learned to trust my gut, and my gut is telling me to seize every day with not only Sarah, but all of my children like it is their last. I hope my gut is wrong, and I am reading too much into this icky feeling.

Bob and I spent a good part of last night talking about all that has happened in our lives. We both know that at any moment any of us in our family could die. We all think that we are guaranteed a lifetime of memories and living, but in truth, that is just not the case. We are all on our own time clocks, and have no way of knowing just when our time here on earth is done. It is just a horrible feeling to know that your child has a disease that gives her a greater probability of expiring before she grows old and outlives you.

 I think that the next 6 months will tell me a lot about her disease. She will on Imuran at that point for a while, and we should be able to see how good of a job it does at getting and keeping her in remission.

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Now, all of that being said, I am done with my pity party. I refuse to let this disease beat me down. Yes, I will have my sad days and I will have some posts that are ugly. But, I can choose to get depressed about the way life might be, or I can go out there and live life with my family to the fullest. Being in a continued state of despair and sadness only passes the time by that I could be making memories with my family. Being sad only lets this disease win. I refuse to let this B&%^# beat me.

What a gift that is. To know that life is not an unlimited amount of time. To have that reality staring at Bob and I each and every day as we look not only at our daughter, but at our other three children as well. I no longer will be able to live in the past or in the future. I am forced to live in the moment. I don't want to look back in 5 years, and God forbid Sarah is no longer with us, and wish that I would have hugged her one more time. Or laughed with her, or told her I loved her, or played in the snow with her, or anything else for that matter just one more time. No regrets. That is my new motto.

And, if she lives to be an old woman, we will be all the better for it. We will have lived a life worth living. That is something that no disease can ever take away from us. No matter what happens to her physically we will find a way to live with no regrets and to create memories and to laugh and have fun.

Because of all of this - Bob and I have made some decisions:

 We are going to pull our house off of the market. This home houses our memories and our family's spirit. Yes, we can take that anywhere we go, but here, in this space, is where it is most alive. Sarah knows this house inside and out and I don't want to move her to a new home where everything is strange and unfamiliar. I also hate to be so morbid, but if she doesn't make it out of childhood, I am not leaving this house because there are reminders of her everywhere in this home. We brought her and Elizabeth home to this house when they were born, and this is all that they have known. I am not leaving this house. The kids agreed as well (not that we shared any of this with them. They agree to stay for other reasons). They have been having second thoughts about moving too because they are now at an age where they can bike to friends houses and hang out at a park nearby. Is our house tiny? Yep. Does it give us cabin fever? Yep. Do I wish we could magically make it bigger? Yep. But the fact is we cannot, so this is where we will be residing for a while. This is where our family's heartbeat is. Right here in this home. This is where we are staying. This is not a glamorous house and it is definitely not the place I thought I would be 5 years ago, but if time has taught me anything it is that we are all always right where we are meant to be.

We also are making this a year of trips and vacations. We sat down this morning with the kids, and have planned out several trips throughout the course of the year. Cool trips that will enable us to create a year that will be unforgettable for all of the right reasons. A year filled with love and laughter. A year filled with hope. A year and a lifetime of not EVER looking back and having regrets.

We will share our trips with you as each one gets closer.

Thank you for allowing me to vent yesterday and for being a bit dramatic today. Now, let's start having some fun, eh?