"It Has to be Red"

I've been mostly "off line" this week as the kids and Micah have been home for spring break and we've enjoyed just being home together. When I say "enjoyed just being home together," what I mean is the time off was full of small, fun moments; lots of sleep and rest; and punctuated by a list of all the things I've been dying to do around the house, but haven't had the energy to tackle. Poor Micah got his full money's worth out of this week of spring break. Or maybe I should say I got my money's worth out of his time off...

I've also mostly been off line because the time off has given us a little more time to process life. And as we've processed, we've hit some raw places. Mine have come in waves, as always. This week has sapped my energy and strength, and my symptoms in general seem to be in decline in the last few weeks. To sum it up in commercial terms, where I used to have the stamina for Costco + dinner out, I'm now reduced to a short shuffle through Meijer. The increased fatigue and weakness have come with their own complement of emotions. Micah's rough patch came mid-week, when the weight he's been carrying for both of us finally caught up to him. He's been trying hard to be the strong one for us both, but the reality of life is just difficult sometimes.

I don't say any of it for sympathy or pity, but just to say this week has been a big step in our journey. We come to terms with this a day at a time, and I've been grateful for some long, quiet days to do just that this week. I'm also beginning to look forward, and new questions have surfaced as I enter my last week of my leave of absence. I've been grateful many times for the time I've had off, and in hindsight, I needed it more than I realized. But during these six weeks, my symptoms have continued to worsen. I'm not really sure what full-time work will look like for me next week. I'm a little anxious about it, and not sure how my body is going to do keeping up with the 12 and 14 hour days that await me when I get back. But, as with everything, we will take it a day at a time and get rest where we can...

We received three beautiful gifts this week, and they each meant the world to us. Last week I had mentioned to my family that I hoped to mulch our gardens this year to cut down on weeding and maintenance. Early in the week, my sister called and asked whether she could come over and do it. It was blisteringly cold (I think the temperature barely cleared 30 degrees!), but she was out there helping deadhead our plants, and covering the beds with mulch. Every time I look out the windows, I smile. It was a beautiful gift of time (and a sacrifice to be out in those temps!).

The next day, my mom stopped by after work. She told me she'd cried when she read the post about our trip to Ikea. I apologized for not having told her about it in person, and immediately she said, "It took you a week to write it--I know you needed some time to process it all." She told me she had something, and hoped I wouldn't be upset. She went to her car and returned with a transport wheelchair. "I promised you I wouldn't buy anything until we knew what's going on, and I didn't buy it--it's rented. But I want you to be able to participate in life, to be a part of things. Plus, it's red." I cried. She cried. It was a beautiful, teary, wonderful moment.

Today we were at Micah's parents house for a visit. Many years ago, when I was about 8 or 9, I invented a holiday on April 8 called "gift day" because I loved making little gifts and trinkets for my family. I had forgotten I'd told my mother-in-law about it years ago. As we sat sipping coffee today, she asked each of the kids if they knew what today was. Finally she asked me, and I answered, "Well, this was gift day when I was little." They handed me a wrapped gift with a card. The note started with, "Happy Gift Day!" I unwrapped the paper to find a set of beautiful cork-handled, red walking sticks. She explained, "We want you to be able to hike--we know how important that is to you. We went to the store and described everything to the salesperson, and then I said, 'And you won't understand this, but they have to be red.'"  That was when we both started crying. 

As with Micah and my conversation during our getaway, none of this is "normal"-- at least, not our old normal. But we're finding our way, sometimes making our way, through all of this. And we're not alone in it! At just the right time, over and over, a friend or family member has had just the right word, just the right gesture, just the right gift, to encourage us. It's been beautiful to watch.

I got an unexpected call at the end of last week. It was a neurologist's office calling with an appointment date. I had been bracing for summer, not expecting to get in any time soon. I'd been hoping for one particular doctor who is renowned for his work with rare neuromuscular diseases. I'd been expecting that Micah could go with me. Ironically, this appointment is absolutely none of those things, and to a certain extent, I think it serves me right! This doesn't fit my "script" in any way, and it actually took me a day or two to come to grips with the fact. I will be seeing a new neurologist this coming Tuesday. My mom will be traveling with me, since it's out of town again. I have no idea what to expect--I didn't see this particular appointment coming!--but I am praying for a doctor who is insightful, willing to listen, willing to keep digging through the layers to put a name to all of this. And I'm praying for a wonderful day with my mom as we travel down (and, maybe, as we throw the wheelchair in and give Ikea another go...). Maybe it'll bring us one step closer to some answers.