Last weekend, we had a visit to the ER with Brynna. It wasn’t anything serious. It’s something that, for most kids, could have been accomplished with just a sick visit to a pediatrician, or maybe an urgent care…but not Brynna. It was just a reminder to me, to us, that we aren’t quite normal yet, and that it will be a good long while before we are. But, it was also such a reminder to me of how far she has come. I will never be able to walk into the VCU ER without vivid memories of that first awful night in my head…the fear, terror, and grief can easily pop back up. But then I look at that beautiful tutu-clad little girl, walking next to me, begging to do the escalator before we leave (even though it’s 10pm at night), and my heart just swells with gratitude. And when the triage nurse took us back, she commented on Brynna’s “beautiful little pixie cut!”. I agreed and proudly said it was beautiful chemo hair growing back, and she said that she wouldn’t have ever guessed, it just fits Brynna so perfectly. My heart just beamed as it just hit me how “healthy” Brynna looks.

It’s been months since I’ve blogged. Months! I can’t believe it’s been so long, and it certainly hasn’t been intentional. I’m often thinking of things I want to share, I write blog posts in my head all the time (do you ever wish there was a “record” button in our minds for things like that?), but then I just run out of time to sit and write. I share a lot on Instagram (almost like a micro-blog!), but even there, I’ve slowed down. In all honesty, I’ve been struggling with social media, trying to figure out the balance of what to share, how to share it, when to share it, etc. During the nightmarish times of Brynna’s treatment, I updated and shared A LOT, because there was a lot going on. Now, we’re slowly (SLOOOOOOWWWWWWWWLLLLLY) creeping back towards normalcy. Things are still a roller coaster, fears and anxieties creep up all the time, but she is doing amazingly well overall. So, what do I share now? Life certainly isn’t all pretty smiles and pink tutus, but it’s also not all snarls and screams and sleepless nights, we fall somewhere in the middle, as I assume most families do! 

When I first started sharing Brynna’s story and our journey, I had a few reasons for doing so. First, I want to remember. I want to remember all the gory details. I want to remember the horribly hard and the victorious. I want to remember the miracles and the sleepless nights. I want to remember every little thing God has done. I want to remember His faithfulness, His beauty, His goodness, HIM. I want to remember that He was with us, every step of the way. I want to look back and constantly stand in awe of the One who has healed her…to see what I AM has done. 

Secondly, I want to be able to share the story with Brynna someday. She won’t remember (doesn’t remember) the vast majority of the awfulness. I want her to know she was loved and prayed for by hundreds, even thousands, of people around the world. I want her to see the miracles God has done in her life. I want to be able to share as much as I possibly can with her. She tells us she wants to be a doctor, so she can help people feel better someday, and whether that’s where God leads her or not, I want her to be able to have a strong view of her own story, no matter what path she takes.

Thirdly, for you guys!! We have never, ever, EVER felt alone in this journey. Yes, we have felt lonely and isolated at times, but not because of y’all, just because of the circumstances and our own short sightedness. Your prayers, love, support, and encouragement have forever shaped us, forever changed us, and we are forever grateful. Please don’t stop praying!! There is still so, so much to come (something I’ll cover in a future blog post). This was a good way to share with everyone, the updates, the good news, the scary news, everything. 

Fourthly, it was my way of processing everything. I would never call myself a writer (although a huge shout-out to Mrs. Pogue in AP English haha), but it has always been my way of working through my thoughts. There are so many times I would sit down to blog, finish up, and realize I wrote something COMPLETELY different than what I had even intended to write! That is God. I always surrender my thoughts to Him as I write, knowing He’ll lead me in the way He wants me to go. I also have posts I never posted, because I realized they were just for me. They were just between God and myself, and I was ok with that as well.

And lastly (but most certainly not least), I want to reach and connect with other families going through the same or similar journeys we are. Hearing your child has cancer will rock your world in a way that only those who have heard the words can truly understand. I want to share our story with anyone who wants to read it, not for us or our “glory”, not for Brynna, but for God. to God be ALL the glory. There is absolutely no way we would have survived this past year as fully and wholly as we did, if not for the grace of God and His faithfulness. I want our lives, our story, our journey to point solely to God. I want people to see there is HOPE and it’s Jesus. I also want to share our struggles and our hardships, our fears and our anxieties, our joys and our miracles, so that others walking this path months or years after us, can catch glimpses of the process. Every child’s story and journey is different, but there is a lot that is similar and I wanted to share that.

So, here we are! Getting set to start month 6 (!!!!!!) of Maintenance in a few days, and have 12 ½ months left of treatment. Life has started to normalize, but we are far from “normal”. So, now what. What do you guys think?! I’d LOVE to hear your thoughts and ideas. What would you like to see? What would you like to hear about? I’ve thought of making a survey (is that totally weird??) just to gauge what people think. I might do one on Instagram, we’ll see. But seriously, if you have anything specific, I’d love to hear your thoughts and ideas in the comment section below!

Are there any specific topics you’d like me to talk about? (I have some ideas, but I’d love to hear some of yours).

Does posting constantly on social media, the good, bad, and everything in between, get old? Do I post too much or not enough?

Do you want to hear what our daily lives look like here in Maintenance? 

Is there anything specific, treatment wise, you have questions about? 

I don’t even know what to ask, but I guess that’s why I’m throwing it out there. All that to say, THANK YOU for following our journey, and loving our family well! I am making at least semi-regular blogging, a higher priority again, if for nothing else, than to have our story written out.