February 14, 2007 mcfadyena

One year. Wow.

Trey, at 5 weeks, asleep on my shoulder.


It’s been one year since we began this journey. Valentine’s Day was the day we found out Trey might have an enlarged liver. February 20 was the end of the world. Ry and I went out for dinner tonight to celebrate Valentine’s Day and when it came up, I had to hold back tears. We are in such a good place right now with everything. Trey’s development is doing great, we just started ERT and everything else in our life is awesome. But when I think about what our life was like one year ago, it’s… hard. I can’t even say it without tears coming to my eyes. One year ago…we just had no fucking idea. Pardon my language, but we didn’t. We had no idea. This past year…I can’t even describe it. Unless you’ve been there, it’s unfathomable. And somehow we’ve made it. Isn’t it crazy how life goes on? When your world is crashing down around you, everyone else’s life goes on, and so does yours. Somehow. Someway. And somehow, things get better. Slowly, but they do. And we have learned a lot this year. More than I think I have or ever will learn in one year. Pain, love, family, compassion, devastation, hope, strength, drive, support. What a year.

CONTACT US AND SHARE YOUR STORY!

We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!