Back at Riley

We're back at Riley for a few days. Everett had a 101.6 temp and his ANC bottomed out (so his immune system was out of commission). I have mixed emotions about being here. He needs to be here and we like it here, but I'm still mad that he has to be here. I'm mad that other kids have to be here too. What heart break to see what these kids have to fight through. I want to hug all of them and make it all go away.

Earlier today, there was a little boy, who already had lost his hair, standing outside of Ev's room with a smile on his face. The boy was not much more than 1 year old and was holding his own IV pole, more for support than anything else. I waved and attempted to talk to him, but he just wanted to watch us as his mom talked to the nurse. It was a moment of joy for me as I was still calming down from the worry of my own child.

Back in March, Everett woke up in the middle of the night having troubles breathing. Jeff was out of town, Ben was fast asleep and I heard this bizarre noise. Both my door and Ev's were shut, but I suppose because we live in a smaller home it was easier to hear. I've thanked God many times that I heard him that night. This wasn't his first time to struggle for breath, so we had a nebulizer and albuterol on hand. I gave him a treatment and brought him to my bed. He was fine the rest of the night. The next day we went to his pediatrician and she started him on a schedule of treatments to open up his pipes.

It was after this that I hit a brick wall and realized plainly that I cannot keep harm from my children. I have worked tirelessly to think above and beyond in order to protect them from both little to big injuries. I've always thought, if I can help...why not? And, I'm not saying that's wrong, but my prayers changed that night. I went from praying for circumstances to change to praying that God would help me to be there for them in dealing with the circumstances. So far, God has blessed me with this plea. I've also slept with our door open since then.

(Now for a 180)
For the past 17 days, I have wanted Ev's circumstance to change. I want out. Ev wants out. We all want out. I don't expect that feeling to change and that's ok. I'm mad that this is a battle Ev has to face. I'm mad that I have to watch him struggle through this in all its forms. I'm mad that I don't know when we will play together as a family again. I'm mad that I have to sleep is a sorry excuse for a Lazy-Boy tonight and still have it together tomorrow. And, everything I am mad about is legit...and it's ok because it's not the only feeling I have, nor is it consuming. I'm like a child throwing a tantrum...I'm not getting my way and I know I can't just erase Leukemia from his body. While being mad I am also a mix of other emotions and through it all I have peace. My peace comes from the fact that I know God is with us in this crap situation. I love God even though I am mad. And, I'm certain he gets it.