Life on the Inside

We've been spending our days at home since we discovered Julia's extremely low counts. The kids have been doing well. They have actually been playing really well together and have spent some serious hours engrossed in playing. Our house is hard evidence. Day after day in the house makes for some serious messes. I've been trying not to squash their plans too much, but must they really drag out everything?!

They've built some great forts, painted several masterpieces, setup a hospital with ambulance rescue service, and created some elaborate game about garbage trucks that involves all the trucks, dollhouses, kitchen stuff, and toys in the playroom. I am rejoicing in the fact that they are getting along and trying to overlook the mess- easier said than done sometimes.

Julia has been feeling pretty good- still tired, whiny, and achy- but overall good. She was so surprised to wake up from her nap and find this gift basket waiting for her yesterday. Some of our sweet neighbors stopped over to surprise her. It has a little gift for each day of the month to lift her spirits and give her something new to look forward to- what a neat idea!

When we do leave the house now, Julia has to wear a mask. I was worried she would be uncooperative. I explained to her why she needed one and she has willingly complied so far. The grace shown by children with cancer continues to astound and inspire me.

It really caught me off guard when I saw her wearing it for the first time. It was another one of those defining moments when reality settles so hard you can physically feel the shift. This is our child and this is all very real.
Each little thing that changes is one more step away from the healthy child we remember, another step deeper into the water... further from the shore that we knew as home.

Julia is handling the restrictions okay. She frequently says, "I can't do that because my chemo." She may not understand all the whys and hows, but she does understand the effects of all of this on her life. It broke my heart tonight when she said, "But Mommy when I wear my mask no one can hear me talk." I wish there were another way. It's hard enough to be isolated, then to lose your hair, then to have to wear a mask, then to 'lose' your voice. It's a heavy burden for such small shoulders to carry.

Carter is still have the hardest time with confinement. He just wants out. He wants to go places and see people. Probably even more so because of our vacation last week. He is very helpful and protective of Julia, but its still a strong desire of his.

We have eliminated pretty much all large group settings with kids. But there is one thing Julia has been looking forward to. For almost two years she has been counting down the time until she was old enough to go to Awana, like Carter. She has given up so much with this cancer that I really wanted her to be able to do this. Her doctors have encouraged us to find things that we can do to still give her a normal childhood and this was one of those things. Tonight was the first night of the year. I had it all planned out in my mind and we were ready. Julia was so excited singing and dancing around the house when it was time to go :)

Then we got there and they had changed everything- new rooms, new setups, new procedures- yikes! Time to think on my feet. Things went pretty well in the beginning. She was in the stroller at her own table, with her own supplies completing her craft. It wasn't long before the other kids were closing in with curiosity. Wearing a mask is like a flashing sign, especially to preschoolers. Fortumately next was large group time. They were introdused to the Cubbies' characters, their leaders, and procedures. They stood with their little hands on their hearts and said the pledge and sang their songs. It was very sweet.
The more comfortable she became, the more she wanted to explore. My anxieties began to grow and I just wanted to be finished. We disinfected and she had her snack and we headed out to get Carter. Their class was upstairs- an elevator and a narrow crowded hallway away. (They moved this year, too.) Standing in that line surrounded by noise and people was almost too much. Then you hear the teasing comments of others and I bite my tongue. Then Julia looked up at me waving her arms. Apparently several hours of wearing a mask in the heat makes one throw up... in their mask. And I still have to get Carter. Enough already! We were finally headed out and I just wanted to be back home.

Our outing tonight has given me a welcome change of perspective. Being at home is not captivity for us, but instead freedom. When we are home we are free to live our lives without constant threats, precautions, second-guessing, unknowns, and surprises. The kids are free to play and move around as they wish. We can each do our own thing or enjoy things together. It makes me think of the Christian life. So many people view Christianity as a list of DONT'S, but it is So much more than that! It is giving us the freedom to live out our lives in victory with God's wisdom behind us to avoid major pitfalls. Who wouldn't want that?!

So I approach tomorrow with a fresh face, excited that we are staying home (and Carter is going to the pool with his friends!). This season of our life is unique in many ways, but it is also a blessing in its own way.