As I mentioned in my previous post, I am following Emily P. Freeman’s lead and treating the month of January as my week between Christmas and New Year. One topic I’ve been reflecting on during this time is what decisions I’m proud of myself for making last year. I am prone to second guessing myself constantly. Taking a moment to acknowledge when I get it “right” has been helping me see how I can continue showing up for myself and others moving forward.
Here are three of the best decisions I made in 2025:
1. I volunteered with Operation House Call.
Last year felt like a never-ending ableist nightmare for families like ours. Every week brought with it more infuriating headlines and legislation from the new political administration. Meanwhile many people thought it was once again acceptable to use the R-word. (Reminder: It. Is. Never. Acceptable.) I was glad to hear about The Arc of Massachusetts’ Operation House Call. This program pairs medical with families affected by developmental and intellectual disabilities. Through home visits (in person or virtual), students learn what everyday life is like outside of the clinical setting for disabled people and their caregivers. This gives students a better understanding of and appreciation for aspects of their patients’ lives that they otherwise wouldn’t be able to see. The hope is they will become more inclusive, compassionate healthcare providers as a result, looking beyond medical records and seeing the actual people they are treating.
We have had two home visits so far, and have meet some great students. They are genuinely interested in learning more about JB’s likes and dislikes, as well as some of the challenges we face in his care. I feel like volunteering with the program gives me a chance to educate the medical community about our experiences in a real way that goes beyond the sound bites and downright lies of our political climate. And it gives JB a chance to see the next generation of “helpers” from the comfort of his own home.
2. I enrolled my son in his first therapy intensive.
In June, JB completed a three-week intensive program at NAPA Therapy Center. The session consisted of physical, occupational and speech therapy four hours a day, five days a week. JB was an absolute champion, working harder than I’ve ever seen and learning new skills every day. I don’t think I could have ever imagined how exhausting – and transformative – this experience would be for not only my son, but for my husband and I, as well.
I will never be able to convey just how meaningful it was to be surrounded by other families like ours during those three weeks. These were all other caregivers who understood the very real challenges we faced every day, as they faced them, too. When a feeding pump alarm sounded, at least three families ran to see if it was their child’s pump making the noise. No one batted an eye if a child had a meltdown or talked with an AAC device or wore a bib. There was even a room specifically made for kids of all ages who required diaper changes.
I will look back fondly on our family’s first therapy intensive at NAPA Center, and I am looking forward to any future sessions we decide to attend.
3. I trusted myself when it came to my own medical needs.
Last year, my dentist suggested that I may have obstructive sleep apnea. After researching the symptoms and risk factors, I realized he was probably right, and I was referred to a sleep specialist. From the moment I walked into the sleep specialist office five months later, I knew I didn’t belong there. It wasn’t long into my appointment that my concerns were confirmed. I explained that as a caregiver for a medically complex child, I was not interested in a CPAP machine for myself. I had too many other monthly supplies to refill and equipment to manage. I wanted to discuss some of the other treatment options available before scheduling a sleep study, citing the research I had done. (Again, don’t mess with a medical mom!)
The provider stopped me mid-conversation, insisting a CPAP was my ONLY option Mind you, I hadn’t even had any testing, so there was no medical basis for her assertion. It was very clear that if I didn’t want a CPAP machine, they didn’t want me as a patient. Then, as I was leaving, she put on a fake smile and said in the most condescendingly sweet tone I’d ever heard, “Don’t forget, you have to take care of yourself sometimes, too, Mama.” Yeah, I was never going back there.
A few days before my appointment from hell, I saw a social media ad for a dental appliance that supposedly helped with sleep apnea. I don’t know why, but I had saved the post. After the appointment, I did a bit more research on the company – Daybreak – and the product. Was this just another scam? I signed up for more information, and in far less time than it took to even get that initial appointment from the sleep clinic, my sleep apnea had greatly improved.
I am so happy I followed my gut and looked for an alternative. I love my dental appliance, I feel much better, and have had nothing but great experiences with this new company. Most of all, I am glad I didn’t let that sleep clinic professional shame me into agreeing to a series of tests and equipment that I knew would not work with my lifestyle, budget and needs.
Is there a decision you made last year that you are especially proud of or that you’d like to share? Comment or send me a message on Facebook or Instagram!
Image credit: Edited version of photo from Ruth Black on Canva.
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