A couple of weeks ago, most of my days with Brynna were spent simply laying next to her. The first week we weren’t allowed in bed with her, and it was torture. The second week, we could carefully lay next to her, but couldn’t hold her. She was still out of it a lot, so I spent some time reading and writing. One of the books that we were given early on was a book on childhood leukemia, written by a nurse whose own child had leukemia. The book is an easy reading level and designed for those of us without a medical background, so it’s extremely informative.
As I was reading, I felt my anxiety level rising. I had felt such a huge sense of peace and hope about Brynna’s diagnosis, but as I actually read some of the details of her condition, it hit me again REALLY HARD. There are 4 main factors that make someone “High Risk” when it comes to leukemia:
(1) Age – Anyone younger than 1 and older than 10 is high risk (so Brynna doesn’t fit into this category)
(2) White Blood Cell Count – Anyone that has a WBC count of 50,000 or more is high risk (Brynna’s was 600,000, so she is definitely high risk here)
(3) Genetics of the leukemia cells – There are a few genetic mutations that the leukemia cells can have, and Brynna has 1 of them, making her high risk here as well
(4) Day 28 – If she is not in remission on Day 28 (30 for us), then she will fall into the high risk categories
I knew all of these details, and I knew she was high risk, but as I read, I realized I hadn’t known just HOW high risk she was, and I was all of a sudden terrified. I had to put the book down (and I honestly haven’t picked it back up since). I was devastated all over again. I just laid there in bed next to my sweet girl, crying out in anguish and anger to God. WHY!? Why did she have to be so high risk!? Why did her WBC count have to be one of the highest they have ever seen? Why did she have to test positive for any of the genetic markers? Why did she have to have leukemia cells found in her spinal fluid and retina (which is high risk in its own way)? Why did she have to have leukemia at all!? I will never know the answers to these questions, but as I laid there sobbing and praying and crying out to God, I felt a small whisper on my heart…
“Watch what I AM can do.”
Watch. Watch. I tried to figure out if that was just my mind trying to calm my heart down, or if it was an actual whisper from the Lord, but I knew what it was. I have no idea what this will entail. I have no idea of this means that she will be in remission this week, or if she will enter into another high risk category. I have no idea what God is going to do, only that He wants to show me what He CAN do. He wants me to trust Him with my whole heart, with my precious daughter, with my life. He wants my unwavering faith. And that’s hard guys. That’s so very hard. I don’t know why I think I can do a better job sometimes, but I always try to pull things back into my hands, into my world, so I can handle them…but that’s not the way it works. Have you guys heard the song “King of the World” by Natalie Grant? It’s one of my favorites, and if you haven’t heard it, I highly suggest you at least google the lyrics.
I tried to fit you in the walls inside my mind
I try to keep you safely in between the lines
I try to put you in the box that I’ve designed
I try to pull you down so we are eye to eye
When did I forget that you’ve always been the king of the world?
I try to take life back right out of the hands of the king of the world
How could I make you so small
When you’re the one who holds it all
When did I forget that you’ve always been the king of the world
I often forget that God is the king of the world. He created me. He created Brynna. He loves Brynna more than I ever could, and I find so much comfort in that. And now He’s telling me to watch. I assume there is also a “wait” attached to that, but I will wait, and I will watch what our God can do. I also believe there is an incredibly special plan in place for this little girl. As my dad told me one night, God doesn’t bring someone through a trial and storm like this for nothing…He has something incredible in store for her, and I can’t wait to watch and see how that unfolds over the years.
And on a similar note…Cole is still not sleeping well, in fact, I’d say he’s gotten worse. I am going off of probably around 4 hours of sleep most days, with little coffee (because I lost my travel mug somewhere along the way). There is no way I should be able to make it through each day, day in and day out, except God. Even though He’s saying “no” to Cole sleeping through the night, He is giving me the strength and endurance to make it through each day, and I am grateful for that!
