Christmas Report

I have started a blog post several times and it just hasn’t seemed to properly coalesce. The past week has been a bit of an emotional roller coaster, so what I have wanted to say keeps changing. Now to try to catch up!

I would say that the buildup to Christmas last year was much harder, at least for me (hard to judge for my kids). But the actual days of Christmas Eve and Christmas? Absolutely were harder this year. That dreaded “the second year is so much harder” I have been warned about? Perhaps. All I know is that the evening of Christmas Eve may have been the loneliest I have ever felt (OK, probably not, but it was bad).

Experiencing waves of loneliness is a regular part of my life now, and I am used to it, if one can ever be completely used to something like that. I know that nights tend to be the worst, after the kids are settled in bed, so I’ve created routines and practices to help combat that. There’s a reason that I write out my daily gratitude list at night. It helps to think back on the blessings and positive things from my day, rather than wallowing in any self pity (I abhor self pity) or letting my mind focus on things I may feel I lack or wish I had but don’t. That’s not the sort of thing I want running through my head as I fall asleep.

Back to Christmas Eve, however. It almost took my breath away how sudden and heavy the weight of that loneliness was, how sharp the pain of loss, how completely alone I felt after my Christmas morning preparations were all done. Reminiscent of how things felt at the beginning when the grief was so new. That hard to swallow, physical pain in stomach and chest, almost stupor of thought that TV and books are unable to pierce. Not sure why that hit so much harder this year than last, but it was not a pleasant feeling. It took me a while to be able to fall asleep.

Christmas morning with the kids was wonderful, though, their enthusiasm contagious even if that weight in my chest had not completely dissipated and tears did seem just under the surface. Some of those tears certainly found release when we attended my dad’s ward for their musical sacrament meeting service. My mom was always heavily involved in anything music related at church, and amongst other contributions at Christmastime she directed a chime choir in her ward. I was pleased when they invited me to direct this year, in her honor. No surprise that participating in those rehearsals, and then during the meeting itself, was emotional. I am so proud of how that little choir did, though. Many of them had never played chimes before, and they did not miss a single note on Sunday. It was beautiful.

I’m grateful to have learned (and accepted) that tears are OK, even welcome sometimes. I’m grateful that it’s easier for me to notice and name what I am feeling, that I better understand how to let myself fully feel those emotions instead of resisting them. I know that feelings don’t last forever, they always pass. I know that acknowledging I’m feeling something difficult doesn’t mean I’ll stay stuck there. On the contrary, doing so helps me to stay more present and mindfully aware of the moment. In a strange way it also opens me up to being able to recognize other things that are true in the situation, other coinciding emotions I may then be feeling (gratitude, hope, even curiosity about what triggered different feelings and responses).

While my grief felt fresh and heavy on Christmas day, we made so many good memories this Christmas season. Continuing our tradition of M and I watching cheesy and predictable Hallmark-esque Christmas movies (all the better if it involves a prince, of course – man, those make us laugh!). Candy cane bombing different parking lots with friends. Light the World. Secret Santa acts of service for family members. Being able to help at the elementary school Christmas party. Creative and thoughtful homemade sibling gifts. Multiple advent calendars counting down the days. Our Christmas cuckoo clock that plays a different Christmas carol each hour. So many Christmas concerts. Ward parties. Seeing extended family members we don’t get to see often enough. Justifying purchasing a ridiculous number of different types of hot chocolate and cider (hey, they were on sale!). Sibling sleepovers. Lunches with friends. “Chopped” competitions (the teenagers creamed me). Catching up as a family with the newest season of The Great British Bakeoff. Time to just read for pleasure. The annual Christmas Eve gathering at Dad’s house (that one was bittersweet, without Mom), including the cousin Nativity play (minimal drama this year) and opening Christmas crackers. Having a beautiful white Christmas (I still get a thrill out of those). And perhaps best of all, no work for me the last two weeks of December (really the last three, since I missed an entire week when I was down with my bronchitis, but I don’t know that that was especially conducive to creating endearing family memories). It’s been a good December.

Oh sure, there are always “things.” I wouldn’t have exactly chosen to get sick, even if it did let me catch up on sleep and binge watch the Netflix “Harry and Megan” documentary (hey, no judgement here! Promise I didn’t only watch TV, but I did watch more than the zero amount I typically do on my own during the week).

Then, if you would believe it, we had yet another flood this week! The really funny thing was that the night before at a Sawyer family gathering someone had asked about our flooding, how many we’d had, when the last one had been. To which I happily answered that we hadn’t had any sort of flooding since May, and hopefully we were past that chapter in the Sawyer household. Hoo boy. And yes, this was a completely new problem. This time we had water come in from underneath our fireplace in the family room, and removing our fireplace insert revealed that there was water inside the fireplace as well. While this was by no means our biggest or messiest flood, there was still a lot of water! It was thankfully groundwater and not sewage, but it was muddy. Ick. Three hours of using every towel we owned to try and soak up the water from the carpet (for some reason the shop vac wasn’t effective at pulling the water out of it), and we’ve had huge (and noisy!) fans running ever since. The good news is we think we’ve figured out the cause of this 12th flood (from a 9th and completely new source), and have taken steps to fix it. But sheesh!

Lastly, after meeting with the gastroenterologist last week it was determined that our efforts to try weaning off of the NJ tube have not been successful, so January will involve surgery to put in a more permanent GJ (gastrostomy jejunostomy) feeding tube. We had the surgical consult on Tuesday, but don’t yet know the exact surgery date because I am changing health insurance (thankfully!) starting January 1st and we will have to get the preauthorization and scheduling done next week. But can I tell you how excited I am for this new insurance? One with a $0 deductible and individual maximum out of pocket of only $2500?!? To put that in perspective, I have hit the max out of pocket five times for this child in just the past two years. Plus thousands of dollars out of pocket each month paying for all the enteral (feeding tube) supplies and care that our current insurance did not cover at all. Hooray for having insurance that will help with those expenses starting next week!!

While there are some things that seem like they will be easier with the GJ tube, and we are hopeful we can avoid further feeding tube related ER visits, there are some things that will be more challenging. And any surgery involving the gut is complicated for someone with SMA and her other conditions. So we’ll take things one day at a time. The first six weeks will likely be the hardest, both healing-wise and with overall adjusting, but then we should settle in to our new normal. All while continuing to explore ways to help this child be able to tolerate eating more food orally. The doctors, and we, haven’t given up hope yet! She was given a priesthood blessing that promised healing, so while we don’t know the timing of that, we trust that those answers and help will at some point be there for her.

Lots more thoughts to write and share as we approach this new year, but I mostly intended this post to be an update on our December. I hope it has been a good holiday season for others as well!

P.S. This plaque was a gift from a client of mine, which I opened on Christmas morning. I’m not even sure how they knew my WandaVision story (found at Personal Miracles from Unusual Sources – Still Being Smelted and “Hello from Marvel” – Still Being Smelted), but I cannot remember the last time I was so touched. It was such a personalized tender mercy and reminder of God’s (and Kenny’s) love and awareness of me on that emotionally difficult day. I really am so loved. Now to find a place to hang or display it!