I’ve been quiet here. I made an attempt at a post back in April about the feeling of spiraling, of searching for answers, and learning to accept what God places in our path as a family.
To be honest…the trajectory of the year hasn’t changed a lot. And, while it has been a lot to process, sometimes it also feels like too much to share. Too much to repeat over and over. Too many things we don’t actually understand, which makes it hard to explain to others. Too many changing answers, situations, and potential outcomes. Too many emotions that threaten to come to the surface. Just. Too. Much.
And yet – because with God there’s ALWAYS an ‘and yet’ whether we are able to see it or not… there’s also been so much goodness. So many people in our community who have broken through the “hard,” inserted themselves, and kept us going. Friends who’ve let our kids become extensions of their families, staying for days on end. Friends who have fed us. Friends who have helped us keep schedules, who’ve come to or offered to come to appointments or driven us places. Friends who have checked in, made us laugh, or just stood in the hard, trying to understand it all. So. Much. Goodness.
For an end-of-the-year wrap-up – let me give a little bit of an overview. We will call it the Cliff notes version, before anyone reading this assumes the worst of the worst.
For my whole life there have been symptoms that have been “off.” Heart arrythmias requiring surgical interventions. Strange adhesions without causes causing bowel obstructions and even sepsis. A wild proclivity for breaking bones (24) and wrecking joints. Poor healing following surgeries and injuries. Terrible dental symptoms. Recurring shingles. Near uterine ruptures and liver failure in pregnancy. And those are just a few things. Each thing was dealt with in isolation… but every time a history was needed the looks I’d get from doctors would be… different. Yes, it was a lot, and yes, it was complicated…but it just always was that way. From the time John has known me, it’s just been a part of our story. Something we deal with as – whatever it is – comes.
Then several years ago, in 2021, the vertigo started. It started while we were in EPCOT out of nowhere and quite literally brought me to the ground. But then, it kept happening. Other strange things joined it – fainting on a run (a symptom from my past), migraines increasing to 15-16 per month, and more and more. After genetic testing at the end of 2024 I was diagnosed with classical Ehlers Danlos with vascular overlap. It’s complicated and somewhat rare in the specific combination I carry, but, the short version is that it is a connective tissue disorder where my body has a problem producing and using collagen. The part that was “strange” is the relief we felt. It tied everything together. There’s not a “set” way to handle EDS, but, the crazy, strange, “random” symptoms at least had a cause.
And then… the year of 2025 carried on… carrying us right along with it. Suddenly, instead of “random” symptoms happening from time to time, it felt like an all-at-once avalanche that sometimes made it hard to keep up.
Endometriosis got out of control and a large mass on my ovary meant it was time to schedule a hysterectomy. Then, a “ninjury” in April partially ruptured my patellar tendon that would require surgery, occurred. We had a big trip scheduled for July so we decided to treat it conservatively until our return. I needed a pre-surgery EKG because of my cardiac history… it revealed a new arrhythmia, which led to stat testing, which revealed a new shunt and atrial aneurysm. The knee surgery happened. More cardiac tracing took place (and will be something we deal with in 2026). The knee ended up being a little worse than planned and my shoulder took a downturn (to the point that it dislocated on the regular), so the surgeon recommended we take care of it before a full replacement was needed, so that took place too. THEN, just to keep things super fun, incisions didn’t heal well…and we’ve had to schedule one more surgery, slated for the end of this month. EDS suddenly became a central theme and culprit to our year, and honestly, our lives as a family. Pain, recovery, surgery, and a whole lot of unknowns, became our “norm.” I say “our” a lot because John and the kids have been through it all too. Maybe not the same way, but our normal was upended, at best. Some days it felt hard to focus on what we were even dealing with. It became too much to speak rationally about or to try to make sense of ourselves, let alone in how we share with others. Sometimes even asking for prayer felt like a burden. If I’m super transparent, it still does. Even typing it out makes me want to go hide under a blanket a little bit.
I don’t blame you if you’ve stopped reading. It’s a lot; to be honest, it feels like too much to even type or share still… even though there’s a reason for it; I promise.
All of it culminated in a hard conversation with one of our doctors yesterday. The “I think we need to talk about your future in sports and impact-risk activities,” conversation, that he has been holding out on finally came to the surface as we discussed the scheduling of the next surgery to fix what feels like a very broken body. I laughed. He said “I know you’ve been smiling through this and taking it all as it comes… but we cannot fix Ehlers Danlos… just the problems it causes… and it’s causing a lot; it is going to snowball.” I felt like the air leave my body and the room. We talked more then walked quietly to surgical scheduling; the room we’ve sat in a few too many times this year.
The crazy part to all of this is that by the start of 2025 I felt physically stronger than I’d ever felt in my life. I was starting to see success in Ninja land. I ran a few ultras and found a workout regimen I loved. I was promoted to VP of Marketing for my company (it sold in July for an extra fun added 2025 chapter… leaving several of us out of work)… in fact; I started to see “physically strong” and “corporately successful” as a part of my core identity.
And maybe that’s a lesson that I needed, like we all need from time to time. Anytime something becomes a part of our core – especially something that allows us to rely on ourselves instead of looking up, it ought to be at least considered and examined against what God may have for us.
It’s something I’ve had a lot of extra time to think about without a job and with forced rest :).
Here’s that “and yet” again. Because here’s the thing. Right now… it’d be really easy to feel hopeless.
We’ve gotten a lot of comments like that doctor I mentioned saying “I know you’re smiling.” We’ve gotten a lot of “are you okays?” that come with wildly concerned tones and facial expressions…
And the answer is – mostly – yes. See… that “yes” doesn’t mean that it doesn’t hurt. It doesn’t negate being scared. It doesn’t take away the frustration or the heaviness of what has been this wild year or the unknowns that still lie ahead. It doesn’t make me want to (sorry for bluntness) punch anyone in the face any less. But… it’s filled with hope.
This hope is not a false hope. It’s not a fake smile plastered on so that no one knows it’s hard. It’s deep, it’s in our core, and it dictates how we move forward in it all.
One of the verses we have up in our kitchen is Romans 15:13: “May the God of Hope fill you with all joy and peace as you trust in him.”
Am I angry some days? Absolutely (please see aforementioned “punching someone in the face comment). But that anger and the frustration behind it doesn’t remove the hope or the peace that I can only describe as something bigger, and truer, than anything I could build on my own to hold onto.
You see – I’ve written a lot about it before – I’ve been able to see the way God has written my story from before I was even born. I am able to rest in the fact that none of this is something outside of that story and that plan. It may not align with my own goals and desires…it might be really freaking hard…but there’s peace and hope in the knowledge that it’s not without purpose.
A podcasting friend went through public scandal like nothing most of us have ever experienced before over the past two years. When she made a brief appearance before even MORE came out (happening around her and to her – not because of her I feel the need to add), she talked about grief and hope, based on how God has shown his goodness and his steadiness throughout generations, coexisting even in the depths. She spoke about how at her lowest points of grief, she’s felt the strongest pull of hope.
I didn’t understand it at the time. But, as we move forward, I lean into it, especially when tested and held against God’s word. In our family’s case, pain and hope are both flourishing. When that’s heart-deep true (not surface level), then “ultimately good” can be one of the only possible outcomes.
God promises hope – whether we see it on this side of heaven or not – when we lean on and trust in him. As he removes self-built strongholds in my heart, I lean on this more and more… and the outcome I’ve come to see, when hope and pain are both at what feels like their “max,” is deep-rooted peace.
Is there anything you’re holding onto today? Something you’re struggling with? A situation that feels too big or too heavy to carry? I don’t know what it is, friend, but I pray that you’re able to look up and find hope in the heavy. I pray that the peace of God that surpasses all understanding will be something you can cling to like the promise it is, whether you feel it in agiven moment or not.
There’s goodness here, even when it feels like that can’t be true. There’s hope to carry on (thanks old school Jars of Clay 😉 ), and there’s an opportunity to grow…even if it doesn’t look like the opportunities we see plastered on social media or in any other messaging we consume each day. Can you find it? Can you lean into it? Can you hand it UP instead of holding onto it, today?
Let’s move into 2026 with boldness in that hope, trusting in a better story than we could ever write for ourselves. Thank Jesus. Let’s roll.
Take Two 
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