How are you? I hope your year was wonderful and you rested up for your big trip around the world. I have been working really hard to make good choices and be a good sister. I am hoping you have some special things for me to open on Christmas day.
Pretty much every child in the world.
‘Dear Santa’ letters are full of wishes and hopes and light and childhood excitement. I loved writing them growing up, I loved returning fancy Santa letters for my little cousins and now my children. Santa’s spirit is kindness and light and love and faith. All written and answered with love and hopes of magic.
What about if your child’s Santa letter were more like this…
Why? How can this be okay? Childhood wishes for cures, for healing, for no more pain… not for LOL Dolls and video games… just healing. I am so unbelievably proud of her words, of her bravery to share and her compassion for her sister. Cancer didn’t just hurt her sister… it heart Libby too. Her wish… is a real, concrete wish for change- one that most kids don’t have to worry about. I am proud she has that compassion and empathy- but I am sad she has to.
Last night Rick and I were gifted some seats to Melodies of Christmas, a beautiful concert at the most lovely theater to help our Children’s Cancer Center at Albany Med. I watched the show with a big smile on my face- listening to songs sung by an amazing choir, people watching the families there. There were dancers and great MC’s. They shared stories of hope and faith and the children that have changed and built them. It was wonderful. I ran into my Best Day Ever kids, and their families. It really was a great show.
Then came the Melodies Kids, in their little tux’s and fancy dresses. Some kids in wheelchairs, some in remission for a long time, some still fighting and struggling- all forever impacted by their journey. All… write letters to Santa wishing for things most children never have to think about. Those children and the whole theater broke into ‘Silent Night’… the entire song. I stood and wanted to participate. I wanted to stand there and just feel the hope, like the family next to me. They belted it out and I could feel it from them… but it was different for me. I couldn’t feel that light, instead that moment let out all of my broken and confused and hurting. I stood next to Rick and all of my pain snuck out onto my cheeks. I know he felt it to. I searched for an open exit to sneak out before anyone I knew found me like this. I hate feeling so raw in front of a group of people, it is like standing naked. I sobbed right there in Row W.
What I felt was… it was very clear to me. I felt such a sadness that Madeline didn’t get a chance to be a Melodies Kid. She didn’t get a chance to stand up there and belt out ‘Silent Night’ with her Cancer Family. She got 5 days. The thing is… even if she had a different journey buy the time Christmas came in 2012- she would not have been able to perform, swallow well or stand for long. DIPG is a monster, all cancer is, but DIPG is THE BEAST. There were no kids on stage with DIPG. I turned to Rick and said isn’t it sad that there are no DIPG kids up there- not because there aren’t many all over the place- but because their cancer steals all that away too soon. Too soon they head to heaven, too soon they have to leave us here on this journey to Christmas and move on alone. I felt proud and glad for those kiddos up there on stage- just sadness that mine isn’t there.
Christmas is hard… it is all hard. Seeing wishes from children for a cure and for no pain for a sibling is hard. Seeing children shop in a hospital for Christmas gifts because that is where they mostly are and they can’t be in germy worlds- is hard, joyful but hard. Watching children on stage who have been to hell and back sing to the most solemn and serious Christmas song was breathtaking and felt like a nail in my heart. It.should.not.be.this.way.
Christmas without always hurts, always stings. I am never fully without- but a part of me left for heaven almost 6 years ago. I try my darndest to celebrate her along with feeling the pain… sometimes though I just feel the pain. Grief is a journey that I love and hate.
Today I just sat in it, I feel surface happy. I have work to do to be ready for the magic on next Monday. I want to be sure they feel Jesus, Santa and our Madeline that day. I feel the rest today though… I feel a tinge of jealousy, a bit of broken and some solid sadness- but I feel proud, loved, surrounded and as light as I can be.
I hate cancer. I hate it with so much of my soul. I work to change in any way I can- but mostly I work to support those who have this Childhood Cancer Shit dealt into their lives. I think God sees my job in the support- and others in the research. Today a child, a teen, with DIPG will have a Best Day Ever ‘Last Jedi’ style… just like Libby wrote that letter, his gratefulness is not lost on my heart. He is grateful he made it to see the ‘Last Jedi’… I am grateful and sad he knows that this is his last Start Wars adventure- He and Star Wars story’s have endings. He chooses to love his life, we should too. We should rock the life we have, the time we get. We never know…
I am going to take that letter to Santa, that moment during ‘Silent Night’ and feel it all. Feel the sad, the glad, the mad, the light, the dark, the grief, the love… all of it. I challenge you to do just that… to carry these tokens with you. Someday maybe there will be no sick children to sing… someday maybe the Melodies of Christmas will just be a night of Christmas music. I pray for that… I pray for Madeline to come bug me… to show up in a dream and to remind me of her presence this year. To let me feel her while we unwrap and celebrate the Christmas Spirit…