The Camp Out From Cancer tent is pitched on Gwen's bed and Ava's dress from her transplant party is hanging off the end of the bunk bed. There is so much in this room that reminds me of this season, of the kindness of others, of the fact that people want to bless us while we walk the dastardly way that cancer leads us.
This Zippy Sack, though, was a gift from us to her. She had seen it advertised once during the countless hours of media entertainment that kept her company during all her neutropenic months. "Please can I have a Zippy Sack?" she asked me again and again. I always answered with a "We'll see." Because, come on, how many blankets does the girl need? Also, their beds are unoccupied every single night because they like our bed better. But, I have to admit, this is a good one. It's soft, stays on the bed, and it's too easy to make the bed with that nifty zipper on the side.
We bought it for her a few days back when she was complaining of pain from her chloromas. "Let's go to Toys R' Us!" I said. It wasn't because we didn't have enough toys. Also, not because I longed to turn my children into entitled brats. But sometimes when your child's cancer begins to grow into tumors that cause suffering, which require high dose pain meds, all the long term goals get tossed out. Short term objectives are all that matter.
Medicate her. Pray for her. Distract her. Repeat.
I cried tonight into her Zippy Sack because I didn't want this to be my last Mother's Day as a mom to three children. I didn't want this Zippy Sack to be the blanket that covers my girl during her hospice days. I didn't want my grieving friends to have to feel this day in all its blistering, burning ways.
This pain is so unbelievable. The involuntary quivering of the muscles, the physical force exerted on the body from perpetual stress, the cottony head from crying so long and hard, the sore joints from sleeping fitfully, the actual sensation of injury to your heart, the gasping for breath. It. all. hurts. so. bad.
And we haven't even passed through the darkest valley yet. Oh God, be merciful.
We thought we were so smart to celebrate Mother's Day on Saturday when the restaurants were less crowded. We told ourselves this while driving from one restaurant to the next with all the same wait time of an hour. When I walked into Beppo Di Buca, I thought we hit the jackpot. There seemed to be absolutely no wait. But as I approached the hostess, she gave me a grumpy look and told me that they were booked up for at least an hour. I put my name down and walked outside to call in the rest of the family. The hostess, bless her heart (southern friends-you feel what I'm saying), must have been stressed that night because when I walked back in, she asked if I had wanted to put my name on the waiting list. I was confused. I was sure she wrote my name down. I asked her about it and she rudely replied that "nope" she hadn't because she assumed I wasn't interested.
I wanted to shove back and tell her that this could be my last Mother's Day with my daughter and all we wanted to do was sit down and eat some bread because Ava wanted bread. I wanted to tell her that my girl, my sweet bald girl, may die. But, no. No. I didn't think she needed to be privy to the most private parts of our hearts that only those who love Ava should have the privilege of knowing.
It is this way, these intense emotions of hope and despair. We push back against statistics, against what doctors say, against research, and numbers. But they are still there, woefully staring back at us, reminding us that this world is broken, that we are finite, that babies can die too.
We ended up at a sushi restaurant and Ava got to eat rice instead of bread. This is an important detail from the night because we had made the difficult decision of putting Ava on a high-protein, no sugar diet. Ever obedient, she abstained from carbs and sugar for the past week. It was difficult and emotional. But tonight, tonight, she ate white rice and she was happy. We had danced around the idea of getting ice cream after dinner but she decided she had enough sugar for the day and didn't want her cancer to grow. She was so mature about it. Not me. I cried the whole way home because of how unfair it was that my kid couldn't just eat a stupid, nutrition-less ice cream cone because of this vicious disease, so intent on taking her life.
As I wept into Ava's bed, one of my dearest friends from Seattle called and just listened. She wished she were by my side but I didn't want anyone to see me in that moment: tears mixed with snot mixed with wails and shudders. Ugh, it was so ugly.
Death is so ugly.
Thank you, God, for saving us from this end. Your salvation plan defied all earthly understanding. Why you would choose to suffer a loss of that magnitude to make a way for us, we can never fully appreciate. So great was the agony, you had to turn away when your son hung on the cross, even for those who rejected you still. Thank you, Jesus, for redeeming death. Thank you for looking at it straight in the face and punching it down so that it can not win. Although we may suffer for a while, death will not prevail.
Only love can. Only love has. Only love will.
"That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever."
2 Corinthians 4:16-18
"Look here, Buddy, I own you. The faster you understand, the easier life will be for you." -Jude
Because Jude is too young and video games can't wait.
Camp Out From Cancer tent- a wonderful organization to help kids dealing with cancer
Dancing the day away
Gwen, I hope you don't complain about not being able to find your name on a keychain anymore because I found your name on a building. #waybetter
These girls find and hold each other through the dark.
Ava and Juju
Playing Gwen's "kee-tar" in secret so that she doesn't get yelled at. #sinners #allhavefallenshort
She really politely asked if we could
spread weeds make wishes all across our beautiful green grass. #couldn'tsayno #justlookather #shewanted3wishes