We are more New Year’s Day people than New Year’s Eve people. A few years ago, we started having brunch on January 1st at Fielding’s, one of our favorite local restaurants, though our brunch tradition started long before that. (For more, check out my 2020 story, New Year’s Brunch at Home.) During brunch, we talk about progress we’ve made over the past year and goals and resolutions for the year ahead. 

Don’t get me wrong, this isn’t a “perfect family has a nice conversation, and everyone takes turns sharing from their heart” situation. What really happens is that I initiate the conversation and have to round us up again every couple of minutes. Isaac is distracted by people at other tables. Gillian is distracted by thoughts of her upcoming audition. We pause intermittently to interact with our servers and circle back. On repeat. 

It’s a frustrating enterprise but still a good one in my estimation.

Isaac’s progress

I was prompted to think about Isaac’s progress, in particular, a few days ago. One of the websites I follow, Aspire, put out a request for PANS/PANDAS triumphs in 2023. Here is the write-up I sent in:

“Our son, Isaac, now 15, was born with a very rare genetic disorder, one most doctors have never heard of and will never see throughout the course of their careers. He was never an easy child but became nearly impossible around the age of four after an extended illness and hospitalization from the flu, although we wouldn’t make that connection for a long, long time. 

After years of trying to explain what we were living with to physicians, we finally sought help from a functional medicine doctor. Isaac was diagnosed with PANS in February of 2020, seven years after onset and just before the COVID pandemic. Over the past four years, we have done mold remediation to our home and treated Isaac for Lyme and Bartonella while doing everything possible to address neuroinflammation. 

Our big triumph is this: in May of 2023, Isaac completed his 23rd round of IVIG. (That is not a typo.) It may be impossible for us to know what complete healing will look like because of his pre-existing, rare condition, but he is SO MUCH BETTER, and I believe more improvements will come! I am finally writing about our story in hopes of helping other families.”

Finishing Isaac’s immune-modulatory treatment for PANS was a huge milestone. It’s hard to overstate its significance, for him especially, but ultimately for all of us. We are still treating from other angles and likely will be for some time, but IVIG was the biggie. Every treatment meant a full day in the hospital, multiple IVs, anywhere from a day to half a week of recovery, often with an initial increase in symptoms, missed days of school and sometimes missed work. (I would say it was an emotional rollercoaster, but the real rollercoaster of the past 10 years was PANS itself.)

At brunch yesterday, we noted many other accomplishments Isaac has made over the past year. On the surface, they may seem like small steps, but in reality they are giant leaps, and each one is intimately tied to Isaac’s recovery. In the past year, Isaac has started:

• riding his bike independently, with no help starting (the last remaining hurdle).
• walking or riding his bike or scooter by himself around the neighborhood.
• opening food packaging independently.
• waking up with an alarm, setting out his school clothes, taking showers, and getting dressed, all independently.
• putting on his shoes and socks every day without help and without catastrophic meltdowns. 
• practicing reading in earnest, which all but stopped with PANS onset at age four.  

Isaac’s self-stated goals for 2024 are to go sky-diving and camping with Todd. Those are not my priorities for him, but hey, he is his own person. One of our growing edges as Isaac’s parents is learning to give him more independence even though he still needs us more than typical kids his age. My hope is for Isaac’s continued healing, for decreased neuroinflammation, and for progress on all fronts, especially emotional regulation and reading, which are closely tied and stand to open a whole new world to him. 

2024 resolutions

I’m not sure I can adequately express how much Isaac’s progress over this past year opens a whole new world to us, his family. It feels like we can breathe a little more, live a little more, hope a little more for even better days ahead. On that note, I’ll share a few of my own resolutions, which you can track with me through Gray Colored Glasses:

1. Do more things that give me joy: puzzles, reading (psychological thrillers are my jam), following through with all of the photos we take, and other creative pursuits.
2. Exercise daily because I love myself.
3. Eat less because I’m filling the void with other things that make me happy.
4. Give myself to the creative pursuits I’ve thought about for so long, including the podcast element of Gray Colored Glasses and social media for our dog Murphy. (Check out @murphythehoppingwhoodle on Instagram, created 1/1/2024!)
5. Move into this new phase in our family’s life by creating chore charts/lists of responsibilities and new household rules about keeping things nicer and neater, so it’s not all up to me. 

If you didn’t see my social media share from 12/31/2023, check it out here. I love what Donna Ashworth says about the new year, that it likely won’t be the best year yet, or the worst. “You see, a year is a mosaic of absolutely everything. Joy, fear, heartache, loss, beauty, pain, love. Failure, learning, friendship, misery, exhilaration.” Like every year, 2024 promises to be “another mosaic to add to your wall of art.”

What about you? Have you accomplished something noteworthy in the past year, even if it’s small? Or do you have any resolutions, goals, or practices you’re aspiring to in 2024?