8 Years Surviving FIRES

January 26, 2025, marks 8 years that David has survived this rare syndrome called FIRES. Usually, as this anniversary approaches, I feel the PTSD mounting. Tears pour from my eyes as I remember our story, reliving the scariest part of our lives against my will. This year, as the anniversary approached, PTSD tried to get the better of me. But I’ve had enough.

Those of you who have followed our journey already know that every year, we celebrate David’s surviving FIRES. This is also a celebration of how far we’ve come as a family and all we’ve overcome. This rare syndrome doesn’t just affect the diagnosed member; it affects the whole family. Celebrating helps to put things into perspective. It doesn’t however, take away from the very real, painful memories we all have and the hardships we’ve lived through to get to where we are now. To get to 8 years.

So when PTSD tried to rear its ugly head, I made it a matter of prayer. Sometimes, in prayer, the Lord has a way of telling us things we already knew about ourselves but just weren’t aware of in our moment of weakness. I was reminded of how far we’ve come, what I’ve learned during this journey, and just how strong I really am. I no longer felt like a victim of my circumstances but encouraged and ready to conquer the approaching anniversary with grace.

I am not perfect by any means. I struggle. I have extremely difficult days, far more difficult than the average person. But with every day of struggle, I grow. I’m a better wife, a better mom, a better advocate for David, and an overall better human being.

Many Christians have verses from the Bible that resonate with them- they sometimes call them “life verses.” I have a few, but one passage in particular has become more of a “life passage” since David’s diagnosis. It is 2 Corinthians 12:8-10. Paul has a “thorn,” some sort of health ailment that he has been pleading with the Lord to take away from him. And the passage goes like this:

Three times I pleaded with the Lord to relieve me of this. But he answered me, “My grace is always more than enough for you,  and my power finds its full expression through your weakness.” So I will celebrate my weaknesses, for when I’m weak I sense more deeply the mighty power of Christ living in me.   So I’m not defeated by my weakness, but delighted! For when I feel my weakness and endure mistreatment—when I’m surrounded with troubles on every side and face persecution because of my love for Christ—I am made yet stronger. For my weakness becomes a portal to God’s power.

There is something to be said about celebrating our weakness. It is exactly what we will be doing tomorrow. While, yes, I feel so much stronger and encouraged after speaking with the Lord, tomorrow is the anniversary of the weakest I’ve ever been in my life, followed by countless moments of weakness due to that very occurrence. But I am celebrating nonetheless. I am celebrating that God has come through in my weakest moments. That is how we’ve made it this far. That’s it. There’s no other way. When people wonder how I still have a smile on my face, this is how. He is the reason I’m still sane. He’s the reason I still have hope. He’s it.

Switching gears a little here, but still on the topic of surviving FIRES, I’ve been involved in a few projects as of late that I’m very passionate about. First, I’ve been involved with a nonprofit researching this syndrome. I am part of the Family Advisory Board, which gives insight to the researchers and helps shape the direction the research takes. It feels good to know that my experience can help further research and better the lives of those diagnosed with a syndrome like David’s. Also, some of you may remember us flying to California this past May… well… we were doing something very near and dear to our hearts that only a few people know about, but I’m finally ready to announce here… we were recording a song. A few years ago, I wrote a song with the help of my mentor from Bethel Music College, the wonderful Antonio Marin. This song is so very special because it is about David. It isn’t just about David, though, it is about every single child fighting an illness or developmental disorder from the perspective of a loving parent. It is about love, sacrifice, and how worthy these human beings are of life and love. I’ll let you all know when this song is available for download, but we still have a few steps before we’re there. Just know, it is coming, and we’re excited.

As always, thank you all for your continued prayers, love, and support on our journey.