We took Wilson back to APU on Monday. He is actually coming home again this weekend so it didn’t feel like the “official” send off but it is the first indicator that summer is winding down fast. Olivia starts her junior year at DPHS next Wednesday and Max returns to PLNU three days later. We took advantage of us ALL being together on Saturday and made a quick stop at Rudy’s former school to sit on the “Rudy Buddy Bench” a bit and leave behind a Lightening McQueen car in his memory (he would be going into 4th grade and turning 10 this fall).
We also took a few minutes to think about this coming year and come up with a word or short phrase to focus and inspire us…and since I’m all about visual reminders I made everybody stamp their word/phrase on a washer to hang on a key chain or turn into a bracelet/necklace. Ha Ha! The family picked some good ones… “grow”, “faith”, “hold on tight” and “all my hope”. My choice? A mantra I’ve been repeating over and over to myself for a few months now…”My faith is greater than my fear” (but I shortened it to “My faith > My fear”).
I don’t know how often a typical person thinks about death but I’ve actually thought about death A LOT in my lifetime…certainly in the last decade as we were confronted with the very real threat of death in our household but I thought about death a good deal as a child too. My Grammie Fink made me these embroidered wall hangings when I was little and I remember praying the prayers every night at bedtime and every morning when I woke up. I was very much aware of death as a child but I was also very much aware of heaven and had a sincere hope of heaven which seemed to quelch any fear I might have had of death as a child.
Not fearing death is an amazing gift…especially when you’re actually facing death but it doesn’t mean this process I’m in isn’t without fear. I may not fear death but I do fear the process of dying…especially by way of ALS. This is a torturous disease and I haven’t even hit the really tough stuff yet but as I start to feel limitations due to lack of strength in my arms/hands (i.e. not being able to lift a plate of food into our microwave or undo a button), I realize I’m staring down some pretty scary realities and its terrifying. In addition to the physical stuff, I’m also noticing greater frustration and irritability and that scares me too. I don’t want to lose myself in this process. I want to feel the wide range feelings but not wound my family in the process. I don’t want to add to the suffering by being grumpy and unhappy.
When I think about hardship in life, it’s easy for me to get fixated on life since Rudy arrived but a friend I’ve had for 30 years wrote me last week and reminded me of some significant “seasons of suffering” as a young adult, young wife and young mom predating Rudy for sure. In her reflection, she went on to write “you perfected the art of ministering out of your pain, your struggles, your heartaches. Trish you may not know how rare that is”. Besides being a very generous thing to say, my friend hit on something helpful. Somewhere along the way I learned that, though it can be excruciating, there is rich, intrinsic value in embracing suffering and fear and doing the hard work of processing through it (as opposed to stuffing it or numbing it or running away from it). In retrospect, it not only helped me put life into perspective and highlighted my need for God but it also served to shape who I am at my core…btw, if others were ministered to in the midst of it, well, that was God’s work for sure ;).
I guess what I’m trying to say is as fearful as I am in facing the growing impact of ALS on me and my family, it is how my life is unfolding and I want to live it…I want to glean all that is good internally and eternally and not allow the fear in the experience to control my life. I think it is important to add that I absolutely believe in “eternal glory” as described in 2 Corinthians 4:16-18 and my childhood hope in heaven is still secure today but it is hard for me to truly immerse my mind in it because I’m not there yet…I’m still slogging it out in the muddy trenches of pain and heartbreak…I can take great delight in the glimpses of heaven I see in nature and in the love that surrounds me but they are still just glimpses. This is where faith comes in and though it may be reduced to some schlocky Christian slogan, “My Faith > My Fear” is a lifeline mantra for me as I make the daily choice to not be overcome by my fear…especially since Christ already did the hard work of overcoming for me. 😉
If you have the time and interest, I highly recommend this podcast . It’s a meaty conversation with Kate Bowler (Duke professor, author, historian) who is processing suffering on a level that I can really relate to and inspires me. Here’s a link to her NYTimes article from 2016 as well.