She gifted a giggle…

It’s Christmas time. December moved fast, as it always does. It is like we blink the day after Thanksgiving;  all of the sudden it is Christmas Eve. I feel like it moves faster now that the girls are older and our time is shared. I have a love/hate, easy/hard relationship with Christmas. It was fun this year to teach Faith Formation to 3rd graders… to talk about Mary and her bravery and faith. We did a little Live Nativity play and it was fun (and crazy). I missed a lot of Mass and honestly feel a pull to come home to Mass… to pull that peace into my week. I miss it.

This December I didn’t take time to feel Madeline like I normally do. We missed caroling at her spot, I missed seeing her friends… but she’s here. Time is just different. Christmas came fast…

Rick and I went up to Lake Placid, our little tradition for Christmas. Instead of buying big gifts we go on an adventure, but not a crazy adventure. We go somewhere we can do NOTHING. The gift for us is a buncha nothing. We wander or not, we watch movies or not. Whatever. The gift is nothing, and everything. Life is busy and hard and full… we let all of that go and just be there.

Lake Placid was a hard place to get to on Friday, but we made it through the snow and rain. We landed and looked out the window to the best.view.ever. The trees and lake were coated in snow, resembling a postcard. We woke up and the scene was fluffier and calmer than the night before. I got a little brazen that afternoon, I challenged myself to go outside barefoot and run in the snow. I stepped out and thought about laying in the fresh, fluffy whit snow and making a snow angel- in my bare feet with no coat. I chickened the hell out… but I remembered.

One time I didn’t chicken out…

Madeline was diagnosed February 3, 2012 with DIPG, Diffuse Intrinsic Pontine Glioma. Only weeks after Christmas of 2011, a special Christmas for us. Moments after being diagnosed with a terminal brain tumor our family was working to enjoy the time we had together. My brother secured a perfect log cabin in Lake Placid and our families headed up north for some time together. In Lake Placid we laughed, we ate, we painted, we adventured- we all felt the sad next to the glad. The cabin was amazing, bedrooms and bathrooms for all… a kitchen that spoiled us and a hot tub on the deck for us to turn on and float away in. So we did…

This weekend I remembered a gift.

While in the hot tub, I can still see Matthew holding Madeline, guarding her from any danger he could. I said “Dare me to make a snow angel?” and I hopped out of the hot tub ran across the snow covered deck, down the stairs and plopped into the snow- in my purple bathing suit. I made some markings (ish) and ran back up to the deck and into the hot tub… She regifted me her giggle this weekend.

I stood in Lake Placid barefoot in the snow on this very weekend, and heard one of her last giggles. She brought me back to that moment and let me feel it and hear it. It was a perfect little gift in Lake Placid, a place that deserved many more Madeline smiles and giggles…

Traditionally the girls get an ornament every year, generally a Hallmark ornament, but I couldn’t find any I loved. The giggle I was gifted changed the gift for the girls and Madeline. Under our tree there is only one gift for Madeline- one gift for my 11 year old. I usually find a special angel or cardinal ornament- but this year I found a perfect ornament for her in Lake Placid. Madeline’s gift was an ornament painted with a cabin in Lake Placid- the place that holds her last Earth giggle. My gift in response to her gift…

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Christmas this year was quiet and bright- maybe due to all of the snow reflecting the sun outside. I loved it, just right. We opened presents slowly… Santa was good to my girls. Meme knows that Santa doesn’t deliver- but I reminded her of the magic, the fact that some people helped quietly make the day special and a couple things were IMPOSSIBLE to find (so it must have been Christmas spirit). Santa is alive and well, different than we always see but true to what he is.

Christmas is light, in a dark time of year. I know it hard for so many but be kind to life… life is hard, always has been- always will be. I miss my Lovely… but life is still so brutiful. There are gifts in the dark… giggles to give.

Merry, Merry Christmas to all… and Happiest Birthday to Jesus…

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Dear Santa,

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.

Love,

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…

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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.

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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…

This Christmas… is hard.

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Christmas time is hard, like very hard. While it seems to me that others holidays are happy and filling and fun and easy- mine don’t feel that way. I have to work too hard, too often to enjoy myself and really be present in adventures. It seems silly to me that what was once easy, is now work. I often wonder which piece of missing am I feeling- is the missing child or the tiny family, is it living so far away from my family or wishing I could enjoy the traditions of when I grew up? I don’t really know…

It is hard to tread on these lines of grief, to know which line is which- or where a particular missing is coming from. Is it nostalgia, is it recognition of a missing human, is it missing what I thought my life would look like? I imagined for myself to be successful in a career, to stay married, to make many children… so that when my marriage was 50 years old we would be surrounded by grandkids. I am so far from so much of that… but it is good. Just because something is good right now, doesn’t mean we can’t miss a past chunk of life.

I really miss Madeline. I imagine her turning 11, and seeing her be who she was never able to be. I imagine that 11 year old girls like different gifts- but maybe, just maybe she would still like baby dolls like I did. I wish she were here to model her character to other children and be the big sister my girls deserve. I wish she were here to share in our adventures, I would still have my set of 3 to keep me busy. I even imagine this divorce would have been easier if I didn’t have to miss her, like if she were here my heart would be so much more healed and not scarred. It is so hard…

I have yet to buy the Hallmark ornaments I always get the girls, I need to. Something in me doesn’t want to get them this year… maybe a mechanism to wipe my brain’s slate clean for now. I don’t really understand it myself. I looked in 2 stores and saw nothing that shouted Amelia or Lucy- and their angels sucked. It is just so hard…

Christmas is hard, and this holiday season feels dark and exhausting. I wish the sun stayed up longer. I hate the dark. We burrow in this weather, some might think we are lazy, but it is our time. I feel that the burrowing, is a kind of like hibernation, it’s conserves our energy for when the light comes back. You know where to find us Musto Chicks from about 7pm on… burrowed under our snuggly blankets watching a Christmas movie or The Good Doctor. We are putting our energy on reserve for a time when there is light and spring. It is our way, or maybe it is my way- but those chicks follow suite.

I have shopped, mostly online, since I have had my girls A LOT the past few weeks. I tried to sneak some things at Target and failed… so Amazon it is. I miss when it was fun to shop, to look through flyers and spend a few days shopping. This year the couple times I had to run somewhere, I felt like I was on the edge of panic attack. I don’t enjoy being out in big groups of crazy shoppers… they are so annoying and rude (and I am old). It is hard…

There was an accident with our tree- and that lovely evergreen took a dive to the floor. There were ornaments and tree water everywhere… it was not a fun night. The tree is now permanently lopsided- and the ornaments aren’t where we put them and the pearls are all screwed up. Every time I look at the tree I feel some sad- not the normal at all. I usually find the humor in accidents but a bit of me just isn’t loving my tree anymore. I tell myself to let it go and enjoy this season and the light it brings into our room, but my heart is annoying me this year. It will.not.listen.

Christmas is hard- but I am trying. I am trying to see and build light where it is dark. I am trying to find humor in the broken. I am trying to remind myself that in all that is missing there is love- that it isn’t totally missing. I am trying to keep my chin up and just do my job- so that my girls have magic. I am trying, but it is hard. I thought now I would be used to it…

Christmas is hard, but I am thankful. Thankful for the 2 girls who chase me around listen to all my conversations, for the family that is waiting to celebrate with us when we go home, for this life and the friends I have… for the comfort we have here at the Musto Estate… and for my Great Angel who listens to me when I am most broken. I am grateful… yet I hurt. So is the world… broken next to healed, pain alongside joy and confusion standing with clarity… life integrated with grief.