Thursday, July 10, 2014

The long thaw

Chad and I have been focusing on fun these last few weeks. Grace's doctors really encouraged us to let Grace experience life instead of trying to trap her in a bubble of pretend protection.  They've explained again and again that most of the threat of infection comes from dormant infections inside her own body, the outside threats are less dangerous than we were imagining.  All the same we have to be smart and not be around sick people and be careful when her platelets or white counts are low, but no more bubble. It was just us trying to control the uncontrollable.

(Grace was selected as a special volunteer to play games with a dinosaur)

Obviously being in the hospital was another limitation in itself that couldn't be helped, not to mention last week when she felt so miserable she could hardly get off he couch. But now that she's home and feeling well we've gone to the movies, the beach, the zoo, the learning center and tomorrow we'll try the park. We're experiencing beautiful things again. Exciting things. Things that make life worth living. 

(Feeding giraffes at the Santa Barbara Zoo)

I've really had to make a conscious decision to experience good things again, and to experience them fully. I think I was so afraid that if I felt happy I wouldn't be able to cope if it went away again. And I realized I had become really strict with the kids, I think in order to try to control life. It's taken me weeks to remember how to play, how to smile, how to be silly again. How to have fun, and to not fake that I'm having fun, but to fully enter into it. 

(Just being awesome.)

It's taken a lot of prayer and a lot of self coaching. I've had to redefine priorities and to confront my fears. I'm so glad I did. Tonight the kids and I ran around the couch, playing zombie mommy for the first time in months, both kids screaming in delight. I smiled and laughed and joked, and it was finally free of residual pain. 

Life is better when risks are taken. I've decided it's better to live fully now, while there's life to be had, rather than to try to keep life in my clutches, only to find out I was holding onto emptiness. You can't lose what you don't have, so how could I be afraid to lose joy if I wasn't living it anyhow? It would have been misery now and misery then...only worse then, because there's no way to go backwards to recapture the time that could have been lived. 

I'm so glad we realized that we have to cram life into the moments we have. Grace starts steroids again tomorrow and we'll have another week of a miserable kid sleeping on the couch all day. I'm so glad we got to get in some fun before we have to pause again.  And hearing Grace laugh, seeing her dance and play, and take care of her brother, it's the vision of her that I hold onto when she's swept away into the state of living defined by her chemo. 

1 comment:

  1. Just catching up on your blog. This post brings me so much joy - that your family is experiencing some fun days amidst the long hospital stretches and days on the couch; that you are learning how to be present and become a little more comfortable with all the uncertainty (Are we ever fully comfortable with uncertainty and lack of control, though? It's debatable. Especially with what you all are going through); and that you are so graciously and vulnerably sharing your struggle and growth and wisdom with others. Thank you for allowing us a glimpse into your life, your heart, and your mind.