Highs and Lows

Going to the Disney store for the first time!

I haven't posted in a few months. There are moments when I think I should share something here, but it takes energy. I have to organize my thoughts, figure out if my words mean what I want them to mean, and then edit again. It's quite draining.

I still haven't fully grasped the fact that our daughter has cancer. Definitely not in a stage of acceptance or peace because we are only done with 2 rounds of horrible chemo treatments and there are 7 more. Jason and I realized that it's been more than 6 months since her diagnosis and surgery to remove the tumor, and there is a distinct feeling of life before cancer and after.  This time last year, Sophie began to ride her bike, started swimming lessons, gymnastics, and learned the rules of the road at this cool camp near our house with real train tracks and traffic signs to obey while riding a tricycle. Her hair was finally growing out to a length that was manageable. My favorite age for her so far was last year when she was 3 turning 4. No more terrible twos, she helped with chores around the house, loved playing with her sister, and was so much fun to be around.

Days are now filled with chemo treatments, waiting for her blood counts to drop, praying she doesn't get sick, and then tension easing when her counts trend upward. This is constant and not how I imagined her life 2 months before she turns 5.

Jason and I are at different places in this journey. He's looking at next year- January 2014 when all the treatments will finally be done and we can hopefully move on from chemo. Strange that it's worked out where I'm the anxiety ridden parent, full of stress and what ifs, while he is looking at the end goal and that Sophie is doing relatively well. Usually, I'm the more laid back one and he is not, but I'm thankful because only one of us can be crazy right now.

Slowly, the dark cloud has lifted though. Very slowly. I definitely was in a dark place for a long time and struggled with questioning everything. Why our family? Why our Sophie? Why is she going through this when she is so young? How did she get it? Is it because of genetics, her diet, environment, sin? My sin? Jason's?
Do people really have to stare at her for so long? What is it that they can't figure out? (A few weeks ago, we went to a local Asian grocery store-starts with H and ends in mart- and everyone couldn't stop gaping at her. Even when she walked past them and was several yards away, still stared at her. They'd look at her, at me, back at her.)

Those were questions that just swirled in my head. But when I started asking questions to God, it came from a place of anger more than curiosity. Reconciling in my mind His love for her and this cancer, it didn't make sense. There were many nights where I just asked God WHY? As I prayed for her, looking at pictures of her pre-cancer, I asked God, begged Him to look at her. Does He see her the same way I do? How strong and beautiful she was and how she looks so sick now and is not the same. I asked Him if really He sees her, all the pain, nausea, difficulty walking and going up and down stairs, how quickly she tires, her hair loss, her weight loss, inability to attend school and playdates like other kids and if this is what He planned for her. I pleaded with Him to take the cancer away so she wouldn't have to endure the chemo anymore. Over and over I screamed at Him in my heart how unfair it is and why her. For a long time, I held back because I thought I'm not supposed to be mad at God, but you know what? God can handle my anger and my questions. He hears my begging and sees my crying out. He can take my pain and devastation. Because I am so heartbroken and devastated still. Still.

This past week, we attended Sophie's end of the year school program and at the end they presented a slide show. Jason and I couldn't recognize the pictures of Sophie when they flashed on the screen because 1. she had hair, and 2. she wasn't so painfully thin. There are times these days when I can't remember Sophie before the cancer. How happy and rambunctious she was. It seems like a totally different child. It's only been 6 months, but I can't remember.

But a couple things give me hope. After the first round of chemo the doctor told us that whatever hair didn't fall out from radiation would definitely come out 6 weeks later. Not only did that not happen, but her hair is growing back.  And she still has some long hair on the side that she is able to use as her soothie. (This was a big prayer request.) When I see other kids at clinic, they don't have anything on their heads, but our girl still has some hair.

The other blessing is that we are expecting our third little one in November. A huge surprise to us, but the girls are so excited and cannot wait to change his/her poopy diapers. Selah wants a girl because "Girls rule and boys drool." Sophie wants a boy because she feels bad for Daddy as he'd be woefully outnumbered with so many girls. Jason says he wants a girl, but I'm sure he'd love brainwashing a boy with all things Michigan and sports. It's given us something to look forward to--celebrating life--and people have told us that God still wants to bless our family even through this nightmare. We will take it as that.