Stepping Out of Survival and Into Something Softer

There was a time when everything in my life felt divided into before and after. The beginning, the change, and the unraveling that followed. Somewhere along the way, though, I realized I don’t live in those moments anymore. I live in the now-a place shaped by what we’ve walked through, but not defined only by survival. This is not the story of diagnosis or hospital rooms. This is the story of who I am today, standing on ground I didn’t expect to know so well.

Life looks both like everything I thought it would be and somehow nothing like I imagined, all at the same time. Little E attends public kindergarten, and Little L and I spend our days missing her. We visit doctors more often than most, but far less than we used to.

In the past six months, I’ve found a new sense of identity. I’m starting to feel like myself again, and that be scary. I don’t feel like just a wife and mother anymore, though those roles are my favorite. I am more than a medical mom, even though that role has shaped me in profound ways. I am just Katie, and our family is perfect in all its imperfections.

For a long time, survival was the goal. Everything else was secondary. Stepping out of survival was extremely hard, but so necessary, Life with medically complex kids is uncertain, and every little thing can feel overwhelming and scary. I think, for a long time, I felt like getting from one day to the next without ending up in the ER was the best I could do.

I wanted it to look effortless, but the truth is, I was struggling. There was newborn lack of sleep, and then there was the constant, bone-deep exhaustion. I was walking around in a fog, unsure how to climb out.

Eventually, I realized I was missing some pretty amazing moments by only surviving. I remembered a time when I was truly enjoying life, and I wanted to find my way back to that version of myself. I tried a lot of things, but in the end, I needed to redefine who I was. I wish I could tell you to do one thing and have it work like magic. But if if were that easy, we’d all do it- and I’m not sure it would make the hard feel as meaningful as it does.

If you’re in that place right now- counting good days by the absence of crisis- I see you. I know how heavy it feels to live with your shoulders always tense, waiting for the next thing to go wrong. Survival can take everything you have, and sometimes it has to

But what I know now is that survival doesn’t have to be the end of the story. There is more life waiting on the other side of it, even if you can’t imagine what that looks like yet. You don’t have to rush toward it, and you don’t have to do it perfectly.

My time in survival was necessary for me and my family. Keeping everyone alive was the only goal. That time was not a waste- it was exactly what we needed. And if and when you are ready, I hope you know the fog can lift. In small ways, you can step into a new now. It doesn’t have to be on anyone’s timeline but your own.

In time, I’ll share the practical things I’ve learned – how to speak up in hospital rooms, how to carry fear and hope at the same time, how to come home and keep going. It will be messy and raw and imperfect. But what I hope you feel while you are here with me is seen, because life can be lonely even in a room full of people.

I’ll share our experiences in the hope that something in them might help you feel less alone. I’ll share the good, the bad, the scary, and everything in between. Sometimes there is great beauty in the dull and mundane moments, especially when everything around us feels like it’s on fire.

Here with you,

Katie