Moments Lived

I often think of the saying, "How we spend our moments is how we spend our lives". The quote has even appeared in this sacred space as well.  As the days quietly tick closer to the one year anniversary of Sarah's diagnosis I am reminded of the importance of time and its ever present movement forward. There is no stopping the moments that make up our lives. Not even the most powerful, nor the richest, nor the smartest can stop time. It moves on and on without a care in the world.

Time scares me right now. It worries me so much because I fear that if Sarah does indeed have NMO that she could be one of the 32% that perish within 3 years of being diagnosed. The moments of this past year, I feel, were spent chasing down care for her and trying to find out just what was wrong. What if I spent 1/3 of the time that she has left chasing down a treatment for an inevitable ending? What if the next 2 years are spent doing the same thing? What if all of my moments with her are spent hunting for a treatment or a cure that will make her better when in the end I should have been spending my moments just focused solely on her?

Oh, I know that this scenario sounds crazy and very dramatic. I know this because even rereading my own writing makes me feel a bit silly, but then I remember that she woke from a nap two days ago and both of her legs were tingling. She said that one of her legs felt like it was 50 lbs and the other one 20 lbs. Then I remember that she told me that she almost fell when she got out of bed because the pins and needs were so bad. Things are better now, and she has been fine since that incident, but it scared me so much. I worry that her vision (although doing GREAT right now - she tested ta 20/40 on the last day of her plasmapheresis treatment) will be the first to go, followed by her legs. It is so heartbreaking to watch a disease take over your child's body and to know that there is most likely not a damn thing you can do, but hope and pray.

That is why I am reminded daily of my moments.  Every day that goes by that I say, "Oh, I will start that tomorrow." or "We will begin doing that tomorrow once such and such is completed." I am wasting my time. I cannot live my life as if I have a thousand tomorrow's. I cannot live my life with the assumption that my children will outlive me. I know better than that now, and it makes it all the more worse when I, of all people, waste my days doing stupid things and being wrapped up in things that do not matter.

I know that there are some who have prayed for Sarah and our family. I want to thank you for doing that. I need to ask you to pray for me now and to pray that God shows me how to make each day count. To seize the day and to use my moments to make the best life that I possibly can because I am so afraid that someday I will look at this time and be filled with so much regret.

Carpe Diem.

Photo taken from Pinterest.com