Days 8 & 9 - GRATITUDE

Yesterday and today were all sorts of amazing.

Yesterday, Redden had two good breathing tests, and the one this afternoon was even better! Instead of letting him do them on his own, I stood behind his little crib and cradled his tiny head in my hands, whispering and singing to him. And it worked like a charm. Even when he opened his eyes and watched me he didn't fight the tube or lose his oxygen. He needed me with him. This was proven when I wasn't awake for his night breathing test, and he didn't do very well. 

Nobody can tell me that we don't know we belong together. We're just not right apart.

The day after he was born. Yes, I look like crap. No, I don't care.

We also finished the last round of chemo, and haven't seen ONE adverse effect. No infection, no rash, no swelling, nothing!! AND his belly has gone down by 3 centimeters in 2 days! We are so encouraged that the tumor appears to be reacting well to the chemo, and we are one step closer to being CANCER-FREE!!

Thank. You. God.

And I even got a SMILE!!! This kid is covered in wires and tubes, and being poked every hour, and had a massive tumor in his body, and he still can open his eyes and give me a smile. Warrior, that guy is.

And then, magical people brought my boys by the hospital to see me. I haven't seen them since January 16th. I've never been away from them for longer than 2 nights. We ran races, played soccer and ate popsicles. Simple things. And it helped all of our hearts. But I could see clearly that they were hurting like I was. We all know that this isn't right, this disease that's keeping our family apart. But we all just feel so helpless.

'Mommy, what's CANCER?'

Even after three meetings with the counselor at the cancer center, I still found myself totally unprepared for this conversation. We knew they would hear the word eventually, and we wanted to make sure they heard it from us first. So I choked out words about Redden being a warrior and fighting his battle against a sickness, and how he was strong and we were getting him better so he could come home with us. And I felt like such a failure. Because my words weren't the assurance that I wanted them to be. And I tried not to let my fear show through. And I was so very angry that I had to even have this conversation with them... to ask them to handle such big and hard topics like cancer that I myself can't even being to handle.

But that's life. We live in a broken world. And I'm reminded of that every time I walk down the PICU hall and see all the suffering and pain. Seeing it has brought me so much closer to God as I am not just praying for my kid anymore... I'm praying for every one of those little warriors that I pass by that are fighting their own battles. It breaks my heart.

Now that we've moved forward with our treatments, we are starting to get a clearer idea of what our new future with cancer looks like. And it's going to be just that... NEW and different. A lot of things that we found normal are going to be on hold for awhile. I can't run into the store with him to grab something. We can't take him to our church. We can't have friends over for dinner. We can't let anyone get too close to him when we go for a walk. As someone who's never been a germaphobe or worried too much about a somewhat messy house, this is new territory for me. And it's frightening to think of all the things that could hurt him in the future.

But we have to live like this. We have to protect him until his body can protect itself.

I'm absolutely in awe of our donation page - thank you all for helping us meeting our goal within 48 hours. The outpouring is humbling and simply amazing. To know that we can truly just focus on our son gives me tremendous peace. Thank you. Thank you from the bottom of our hearts. Now that we have a clearer picture of what our future holds with his treatments and his maintenance plan, we had to adjust the numbers slightly to accommodate for what we feel that our future is realistically going to look like for the next 2 years. God has brought so many amazing friends and phenomenal strangers into our life to walk this journey with us, and we are overwhelmed with gratitude.

I know he'll be ok. We will all be ok.

Last night a few wise friends, who know the pain of standing over a child covered in tubes and wires, sent this to me with the reminder to celebrate every single small victory. Because isn't that what it's all about? All those tiny little amazing moments. Those are truly everything.