As we're staring down placing deposits for Mia's 2026 therapy intensives, and because a leak in our basement has expedited our plans to make that space accessible and safe for her wheelchair use, I'm leaving this here for anyone who may feel led to donate. We're so grateful for

Because this community has meant so much to me, it's important for you to know that within three months, the world will get a little sweeter.

Delighted to announce I have reached an agreement with the National Army Museum which will mean that my collection of Victoria Crosses and George Crosses - the largest in the world - will go on display there @NAM_London @VC_and_GC_Assoc

In Oct, after a slew of ear infections, Mia finally got tubes and had an adenoidectomy. She recovered well from that, just in time for a three-week outpatient intensive where she had 3 hours of therapy a day. That intensive ended just in time for our family to contract the flu,

We spent every day this summer out at the pool, floating around, splashing occasionally, and running away from direct sun and responsibilities.

For those interested in a larger Mia update: in 2025, we had 44 medical appointments and 245 therapy appointments. We had therapy intensives in January, April, and November, trips to TN in March and November, and Mia's first beach trip in April! I thought the wave noises would be

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Today, Mia turns 3. It's been a wild year of antibiotics, therapy appointments, small gains, and deep, ever-growing joy. Mia continues to impress and delight, and I'm so grateful to get to celebrate her today.

We're still primarily bottle fed, but we're working weekly with a feeding therapist (along with OT and PT twice weekly) to try to increase her intake. It's a long road, but she's tolerating it well. Mia still loves Ms. Rachel and disco lights, and she has a new appreciation for

For those interested in a bigger update about Mia: After a pretty harrowing winter where we battled a string of infections (ear infections and then c diff), Mia has recovered and is now in a really strong place. She's showing interest in independent sitting, and her awareness to

Happy Sunday, fam.

I'm tired of calling and writing our congressmen. In this new moment, we need new tactics to protect our kids.

We need someone with the policy experience who can help shape what we're saying. We need people with platforms who will commit to sharing and to shaping how we share our stories.

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We'll need some strong marketing to help find the sweet spot of what will catch and keep attention. Would love more experience here! Also need all the basic web elements: a site, some socials, a newsletter. Simple but fast work.

If you have a skillset that might be useful for this cause and you're interested in leaning in right now to help us get something off the ground, DM me. If you're a parent of a medically fragile kid, especially in NC, and you want to join our cause, DM me!

It's time to start a small grassroots group who want to fight for our kids, for their future and for their life-extending services. I'm imagining hashtags, regional gatherings, online petition. Educating and inspiring and showing why kids like Mia are worth fighting for.

Mia's Medicaid services are on the chopping block after NC was unable to come up with the $300Million shortfall from the budget. Care for Mia is considered "optional" in NC. #SaveNCsKids from budget cuts that will shorten their lives.

@NC_Governor Mia's Medicaid services are life-extending, and for a kid with a terminal illness, that's the difference between dying at 2 and making it to 20. We really, really want to make it to 20.

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@NC_Governor So for today I'm arguing that every single person should want to save NC's kids. #SaveNCsKids from medical bankruptcy. #SaveNCsKids from policies that hurt children. #SaveNCsKids from rationed healthcare

@NC_Governor Starting a "Mothers Against Medical Cuts" group where we tell our stories over and over and over again and just pray the right people listen? "Get in good trouble, necessary trouble."

@NC_Governor I'm just so frustrated. I don't know what to do. Writing congressmen feels fruitless. Tagging a governor is a hail mary. What are our options?? Starting an online petition? Doing a "Wheels Up March" where every wheelchair and adaptive stroller and device are invited?

@NC_Governor NC has admitted that the cuts are coming-- the only question is how deep they will be. Who will suffer the most? Both of these proposed areas for cuts will profoundly affect Mia nd kis like her.