Feisty Sophie

She's our baby

(Most of the entry was originally written on Monday, December 10th. I struggled with posting this on the internet because of privacy, but needed to free up some head space. Plus, people keep asking me about my thoughts.)

This past week felt like a haze. I just wanted to pull Sophie, Selah, and Jason out of this mess and come out the other side, telling them, "Let's wake up now. It was just a bad dream. This only happens to other people."

But we're here at the hospital and have been for a week and will be for another two, possibly. What part has been the worst? Possibly when they brought us into another room of the ER to tell us of the 5 cm brain tumor when we expected to get a prescription for a viral infection? When we couldn't go home but immediately got transferred to Lurie Children's Hospital downtown? When the 10+ hour operation took place 12 hours after knowledge of the tumor? Or her devil-child tantrum when waking up 36 hours post-op and then when a doctor asked me if she normally acted like this? Watching her re-learn how to stand, walk, eat, talk, use her muscles? Or making sure Selah doesn't get scared seeing her unni in the hospital bed hooked up to tubes/monitors? Worrying about Selah because she was with me 24/7 and now wondering what she's thinking since I'm not there with her? I'd say all of these moments weigh pretty equally.

After discussing Sophie's future with the pediatric neuro-oncologists, questions raced though my mind about Sophie's life after her radiation and chemo treatments. Will she be a happy, lovely, smart, active girl? Will she be herself? Because in my mind, her life should consist of going to school, playing with her sister, insisting everyday that she wear a short-sleeved shirt in 30 degree weather rather than listening to me, playing with her dad telling him "No, Appa, don't do that." She should be telling me that one friend picked their nose at school and had to wash their hands. Who the line leaders and helpers were that day. How she wants to eat pasta with parmesan cheese. I want to hear her random singing of Gangnam Style, 1 Little Indian, Making Melodies. I miss her coloring within the lines and writing everyone's names and proudly showing me. I want to see her smiley eyes that make my day better. These little mundane moments are so big now, so normal and that's what I want back.

 But with each day passing I'm reminded God is with us. He hasn't forgotten about us. He's here in the suffocating hospital room. When people visit and bring food, He's here. I'm thankful that they ran the CT scan in the ER and that the tumor was operable. And even with the potential proton therapy and rehab facilities less than 10 minutes from our home, it's a reminder. I kept wondering why we moved to Wheaton last year. My family is from the northwest suburbs, our church is located near our townhouse in Elk Grove, we were comfortable in that area. But our community group now has been a huge source of strength and Sophie's teachers and classmates are praying for her. God was in all of this and for that I'm thankful.

He's even answered little prayer requests. If you know Jason, you know he's a talker. Me--not so much. Each day after work he'd ask if we could talk/connect but a lot of times I'd be too tired from the day with the girls that it would be difficult to do so. But here at the hospital with the overflow of visitors, he's able to talk everyone's ear, arm, and leg off and really able to process everything. I see him getting strengthened through those times and  it's helped us to re-connect with some people and meet new friends as well. Also, our little Selah has such an easygoing personality that each caregiver is just another person to run around with and feed her. She doesn't care who gives her food as long as she gets it.

And when I look at Sophie, I am thankful. She is my beautiful, fun, stubborn girl that is only 4 years old, but really has the inner strength of an army. God made her knowing that she can withstand this long ordeal. He knows every detail of this girl. Of course I want God to answer the whys of this situation. Why our daughter? She's still a baby. She's too young. There's no reason or cause for this to happen. But still,  I have no doubt He loves her and cares for her. Because if I get stuck in the pit of whys, I will stay stuck there. And I can't afford to do that with all that is to come.