I do have hope that He will guide us through every outcome, even the very worst one.
Every blue light, every enormous cardboard box, every small gift, every colorful card, every kind donation, every fund raising effort large and small reminds us that we are not alone. She continues to tolerate steroid titration well and we will be attempting to drop another .5 mg this Friday.
We saw the Rockettes, dined at Carmines, stayed at the W Hotel (a Lea fav!
) and had brunch and a shopping trip at American Girl.
The staff came out with a cake and sang “happy last chemo day….” to the tune of Happy Birthday and I lost it. She tells me she doesn’t want people to laugh at her head because she doesn’t have hair, and that no hairstyle looks good.
As I choked backed sobs I found myself wishing that my kid had leukemia. When I realize how much she knows, sees and understands I match her tears.
I tell her I would give anything to take it all away.
I tell her how proud I am of her, and her bravery and strength through it all.Feeling that support is one of the things getting us through this time and we are so grateful for those that support and stand by us. With this drop in steroids it seems her amazing personality and sense of humor is returning. We certainly don’t need any more owls or art supplies!This blog started as a way to let the many supporters know how we were doing in a way that felt right, as well as an outlet for my stress and emotions. I have heard that Lea and our story has changed some lives, changed the way some are living their lives, made people think and act differently, as well as re-evaluate what is important. I am pretty sure you have sent us every one in the US! Lea can no longer sleep in her bed thanks to all the stuffed animals, and now sleeps on the floor next to them. Lea received a kindle for Christmas and has been reading faster than we can purchase!I smiled and imagined for a moment, my life was not flipped upside down and I was a mom driving her two healthy kids home from school.I love when Lea goes to school and life feels somewhat normal. Driving home with them chattering and laughing in the backseat makes me smile and I wish it could always feel this good. Everyday experiences have taken on a whole new meaning.I know it’s “the most wonderful time of the year,” but this year I felt much more akin to the Grinch, or Scrooge than my usual festive, merry and bright self, toggling back and forth between anger and extreme sadness… Sadness as I browse the Christmas cards and after a few moments hastily type “hope” into the Shutterfly search bar as the gold foiled “merry and bright” cards were burning my eyes. I have not had time to write, or cry, or be, or any of the things I usually do to cope with our situation…