December! I don’t know how this happened. December? 2015? Life has felt good and slow and easy. It surprises me that I type that because, really, we have been pretty stinking busy and stretched. But, it *must* be a God thing, because I don’t think I should have this much “okayness” with life right now. I know that God is with me because I can look back at the chaos life has served me and feel okay. Not just okay, even, but, peaceful. And, there is joy…
The pain isn’t keeping me down all the time, but it’s a subtle reminder of growing disease. A year ago I was walking a couple of miles everyday. I am thankful now, just to walk to my car sometimes. I have been using my hands, more and more, to walk up my thighs as a way to help myself up from a seated position. We’re going to get some of those handles installed around the house, sooner than later. 35 and hips and back growing too weak and painful to stand up without assistance. Humbling.
The reality is, it’s looking more and more like I drew a really bad lottery… twice. Though I have only been diagnosed with Multiple Sclerosis, I also have positive blood tests for Stiff Person Syndrome (SPS). SPS is rare. Super rare. 1 in a million. My neurologist is treating me for it now with every prescription most Google experts recommend, with the exception of anything IV. That is saved for when it gets bad. I thought I might go to some real life expert in Seattle to get the official diagnosis, but… I am being treated now. Which is more than a lot of people who are and are not diagnosed, and suffering, are getting. For that, I am thankful. For right now, it’s the best that can be done, regardless if I have an official diagnosis.
After 15 years of dealing with the medical community, I sort of have an idea of which battle to fight. If, in fact, this is SPS, I am still at a mild stage of the disease, but there is progression. Particularly, the lower back and hip problems. I want to be the fighter.
I want to keep making to-do lists that are too long and planning my church service months in advance and I want to keep daydreaming and pushing this little flower shop along. I want to cuddle my boy and chase the girls to all their activities. I want to see my middle schoolers thrive in Jesus and my Bible study ladies devoted to God. I want to fight.
I have such a great coach in my husband, Toby. He routinely inspires kids and adults into greatness at his jiu jitsu classes, at youth group, or in his sermons. How fitting that God would pair me up with someone so encouraging and strong.
My husband, Toby, and my mom, Susan, at the annual community Thanksgiving Dinner our family hosts in Weiser. And a bag of turkey gizzards.
It’s also ironic, or completely DIVINE, that I have been able to watch my mom so closely fight her cancer over the last 9 years. Although life has been cruel, hard, lonely, and unfair, here she is! Doing the best she can, where she is, with what she has. That 18% chance to make it two years. Ha. After having small intestine cancer reoccur 6…7 times (I honestly lose track), surgery after surgery, battle after battle, she gets back up and tries again. Most would have succumb to the cancer. The pain, the bills, the depression, the weight of it all. My mom has endurance and heart. All bundled up into a beautiful smile and the most tender soul. She is a fighter.
God is good, I am always loved, and I will fight, too.