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…

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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.

… But I wasn’t ready

This week I had to have the talk. I didn’t want to have the talk, I tried to avoid the talk. I remember the day that I had the equivalent of the talk… it wasn’t a good day. I still feel sad about it. The talk robbed much of the magic and wonder… it stole a bit of my naïve. I imagined that the talk would be further into the future- somewhere around 13. I guess I was naïve…

My daughter came home with that grumble in her soul, that stress that comes when she has something bugging her. I wait it out, knowing that she will come to me when she is ready. She hinted a bit about the kids in her class and a poll and how she was one of the few that answered how she did. We dropped Lucy off to basketball and it came out. “Mom is Santa real?”… “Of course, I believe in Christmas spirit and Saint Nick and magic.”… again and again “Mom BUT is he real????????”

She stated that many of the kids in her class don’t believe, they said Santa isn’t real. I told her that they really suck the magic out of something special- and for the rest of your life people will do that, choose to know what you know. She insisted on knowing that truth, which makes me believe she had already made her decision. I was driving and really wanted to cry… thankfully it was dark. I realized this was the talk and I wanted to do it right. Only it had to happen right now- before her sister was done shooting hoops.

So…

I shared the big secret. I told her that I buy and wrap presents and put them under the tree. I am the Santa that gifts her Jesus’ birthday presents. Santa is real. Saint Nicholas is real, he has a special role in history just like Jesus. Santa and Saint Nicholas are more present in spirit during this time of year. Look at people this time of year, dear. People want to take care of others, people spoil poor children, they volunteer to cook at the City Mission, people take care of their neighbors. Lovely, that is all bits of Santa and the spirit of Christmas. I laughed and tried to break any awkward with a little sarcasm “Wouldn’t it be nice is the other 11 months people thought of Santa and Christmas???”… She agreed.

I reminded her that I believe in Santa. I might buy and wrap and spoil her, but there is a North Pole and helpers and magic. I told her just like Madeline isn’t physically sitting with us at the Christmas Tree- she is there. There is no body sitting and enjoying with us, but we can feel her spirit. She is here, just not how we imagined it would be. Santa is here, just not as she imagined he is. She kept repeating to me “Mom… I believe in Santa, I do.” I felt sad that she had to remind herself, reassure herself. I asked her is she was sad, she told me yes. I know that feeling. I didn’t feel mad that I had been lied to, I felt like the surprise and magic were stolen. I imagine that is what my daughter felt…

We made it to 10 years old… obviously Madeline has known for a while so I guess It was earlier. I told my girl the rule- that she knows a secret and she is not to share it with others. It isn’t an unsafe secret, but if she respects this it will be a grown up bit of knowledge that doesn’t break others ideas and beliefs. I told her she is to respect others, including her sister. I told her respecting others and her sister and the magic is VERY important and she needs to do it to be more mature. She promised she would honor that expectation… but a piece of me broke off that night.

The thing is, why don’t all parents encourage their kids to honor other families and other traditions? Why do other parents not remind their child that this is an honored secret? That when you are gifted the talk and you get to move the elf or know that Santa isn’t real- we honor the other kids. Instead of pushing our kids to be older, we can embrace that childhood magic, that spirit. For my own heart and the hearts of many other moms, let’s try to do this better. I felt like my daughter was cornered into believing in not believing. I saw it. Let’s try to do this in a building way, not a breaking. I know I would love to see it.

As hard and sad as it was, it reminds me to be lucky. I have 3 lovely girls, 2 of which keep growing and maturing and becoming. Madeline is and will forever be 5 ½… she travels with us in spirit. I am lucky, well except with Lottery Tickets. I have a good life, I have good words, and I have the best freakin’ girls ever. I look ahead with excitement and fear- I look back with contentment and love. I will forever love and cherish the time that I was a Secret Santa and delivered Jesus’ birthday presents under the surname of Santa Claus. I will forever miss the piece of naïve I took from my daughter on that drive… and I will never get to take back those years of being ‘Santa’ in the way I was. I will try and work to be the mom and me that is needed right now, and in 5 minutes and again in days. I wish… but I can’t change.

Welcome new world, lacking some of what once was…

… the sound of silence

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Silence is hard. It is hard to maintain, hard to feel comfortable and hard tackle all those things that need silence to process. Silence wasn’t always hard, or maybe I never let myself ‘stay’ in the silence. I still avoid it… all of these years later and I know what the silence holds.

I worry and think other moms who have to sit in the silence. Recently I have thought a lot about Christine, Devin’s mom, and how important and impossible the silence is. How hard it is to come by in those years in the beginning when we are driven to create and honor. The silence comes… it always does. I teeter on warning other moms or is it better for them to find and sit in their silence.

The silence hurts. Avoidance does a good job of keeping the pain away for a time, but silence just like grief will always catch up. It will be right there ready for you to ‘sit’ in it and feel all the things that are waiting for you to tackle.

One afternoon recently I was really tired and sore after work, so I took a bath. I filled up the tub, grabbed a towel and put Pandora on my speaker. I got into the tub and finally I felt warm, right about that moment I realized that I left my book and cell phone on the counter in the bathroom. I could see them but I wasn’t going grab them, I shrugged to myself and told myself I would just be present instead of reading away. I sunk my head into the water and just listened… I love how you can hear your heart so well under water. My mind wandered, and I started to think about and worry about a mom who just lost her son, and her silence. I brought my head up out of the water and enjoyed the music. Mumford and Sons Pandora is pretty great for the soul. Taking a bath with music, just enough noise to not feel too much.

The music stopped.

I looked at my phone on the counter, and knew I wasn’t going to grab it to fix it. I just sat there and realized I was just thrown into the silence…

It was like God was telling me “You worry about others, but you still rarely visit the silence… Here it is”. I sat there and told myself that my job right now is to sit in the silence…

I sat…

I stayed in the silence.

The music started, right where it left off. It was as if God paused my Pandora to remind me of the importance of that silence.

In the silence I feel the things I can’t feel in this loud world. I feel the missing… not the surface missing I feel when I am busy living and moving forward. In the silence I can feel the pain of those 6th graders doing all that she should be, the hurt I feel knowing that once again Madeline will only get one gift for Christmas… the hurt of missing her. In the silence is the sorting through the pain… that big pile of pain. When I am in the silence I see how much sorting I have to do… how much pain needs to be touched and felt.

I think of other moms, and some are probably so much better than me at sitting and working in their silence. It is something I must work on. I still worry and wonder and feel for those moms… for I know. I know the silence, the pain. I know how this goes, at least 5 years in.

I need to make room for more silence… and make more room for sorting. I was reminded of this, maybe He gave me a clear sign. I still hurt and worry for those other mommas… and I feel for their work in the silence. Grief is beautiful and ugly. Time is beautiful and ugly. Life is beautiful and ugly.

So I sit more in the silence…

As grown as she got to be…

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On November 5, 2011 Madeline asked me to curl her hair. I took a picture and put it on Facebook, a way for my family and friends to see how much she had grown. I remember looking at that picture and sending it to my sisters, in awe of how mature she looked. I remember thinking that I had the 3 most beautiful girls, even if I was biased. We were all healthy and growing. There was broken in my marriage but at this point life was pretty good and normal.

I can see the timeline now… you know the saying hindsight’s 20/20. Halloween, Amelia’s birthday, afternoons getting dark before dinner and watching Ellen with Madeline after the bus brought her home. A couple weeks after this picture was Thanksgiving, my sister’s all came and we celebrated our own little Thanksgiving. Madeline has a mysterious fever, but over enjoyed the weekend. I remember calling our Pediatrician and he of course told us fevers are a good thing, don’t worry. I didn’t worry. I never really worried, I still don’t. That weekend with my sisters is the first time I can recall any symptoms developing, I think this time is when Madeline’s DIPG started to do it’s evil work.

This picture is pretty much exactly how much Madeline got to be grown… how much maturity she was allowed to achieve. This moment, that popped up on my Facebook, I can feel… I can go right back to it. I can hear her giggle as I took her picture. I can go back. That moment in history was one of the last moments that DIPG hadn’t started to steal Madeline…

It is surreal to me still that it can be 2017 and she is not here… that I only got 5 tiny years to feel her skin and hear her heartbeat. We don’t get to go back, we just get to keep moving along this life. That makes it hard, but when we can dive into a moment in history and feel it, see it- almost touch it… that is a gift. I see her peers grow and post pictures of sports and choir… slumber parties and adventures- I always so happy to see those kids grow and be happy… but there will forever be a pinch of sad in my heart. A pinch for inches she didn’t grow, the adventures she missed and the 11 year old that she never got to be. She is and will be my forever 5 year old lovely, and this image will forever be one of the last moments that DIPG didn’t start taking her.

Madeline and her cardigans… all buttoned up just perfectly. Her neat style and perfect hair, partnered with that dimple… I will forever miss that chick. I will forever dive into those memories, those frozen moments and time. That shirt and sweater are what Madeline is wearing still, with her perfect twinkle toes and her Hello Kitty head band. She is forever just as this picture shows…

Her First Decade

A Decade.

I had never really thought about it that way. In a few blinks, at least it felt that way, I have been raising Amelia for 10 years today. She is my ‘oldest’…

My first decade I spent being little, finding paths to ‘The Mansion’ or meeting friend at the village ice rink. My second I spent trying to be a homemaker… to be a wife. I loved learning and I had this idea of college, marriage, kids, LIFE. Madeline was the.easiest.baby. My 3rd decade is still going, although I am half way through it, has been a life changer. I feel like such a different person this decade…

Amelia Jane was born on November 2, 2007.  She shares her special day with her Great Great Aunt Jane and my baby sister Molly Jane. I love the tradition in her birthday. It is a special honor to share those days, on one day my family thinks of and celebrates 3 great women… women who changed me to the core. My 9 pound 14 ounce bundle of Meme, was the easiest labor of my 3. She came into this world with a big spirit and that spirit has just multiplied exponentially. She is a force, a compassionate and confident force. She feels BIG, her love and happy take up a room- and her pain and broken is the hardest thing to see.

Amelia’s decade has been pretty full, more full than many have in their lives. In her First Decade she has experienced great loss and birth, grief and love, growth and pain. Her first years were full of simple days and adventures, and her more recent half of this decade have been full in a different way. She makes our family work, in all of it’s different.

In her decade she has shown me more of the awesomeness of God and DNA… she has the same feet and hands as me, we have the same eyes. I think it is fascinating that God made her to be so much like me and so different. She is persistent and motivated, she loves to care for others and teach. She is often described as a talker- I don’t know where that came from.

I have loved getting to be her mom for this decade, to build each other and hold each other up. I am honored God chose me to guide her on this journey… I am incredibly impressed with Amelia’s ability to see good and positive in this life.

Amelia came into this world a BIG presence, she has learned to share her BIG emotions, she has tackled the role of being the big sister and not the middle sister with grace. It is like Madeline helped build it in her…

Cheers to this decade, and I can’t wait to see what this next decade will bring. I hope Meme learns and enjoys these coming years, that she is surrounded with builders not breakers… and that she continues with her BIG spirit.

 

Life lived Seperate

This week my daughters went with their dad on an adventure of a lifetime, at least a lifetime thus far. They flew out on Tuesday and will be home in a little bit. I loved getting little updates, a picture of Ireland in Epcot- since they know our Irish heritage, a sign on the water warning of snakes and alligators- since they know I am terrified of snakes… and finally some shots of them enjoying the bits and pieces of their trip with their dad. I looked forward to those pictures every day, but never wanted to interrupt their adventure. I was excited to see the last picture this morning of them enjoying breakfast at the airport… soon they will be home.

I thought I would miss them terrible… but it was different than that. I felt many times a day a wonder of what they were doing right then, reminded my brain that they would tell me all about it today and got on with my day. I went about my normal evenings- meetings, faith formation, running errands and finally a date night with Mr. Rick. It was a good few days… but it was weird to do it all without them. I didn’t spend a million minutes just missing them, but I spent many wondering what kinds of adventures they were on, or if they were bringing Madeline down Splash Mountain.

The thing is… divorce is hard. It is hard even long after the separation and hurt and healing. It is hard. It is a life lived separate for the children… nothing I had ever thought would happen. I love life today, separate and full of so many other pieces now. I don’t crave a life together instead of divorce. I just feel pain when this life lived separate means I am missing a milestone.

The tooth fairy visited for the first time on July 4, 2015. I missed it. I remember Amelia calling to tell me and I told her I was so excited for her, to send me a picture. I hung up and I cried. I sat in my car for a long time and cried… sad to not be the tooth fairy, sad that Madeline never lost a tooth, sad that my life was now lived separately- some of the time. Missed milestones are hard…

It has taken time, but for the most part Matthew and I co-parent well. We are flexible, we accommodate family or traditions. Rick and I watch baseball games or go to recitals, and Matthew is there. I am happy for my girls when their father takes them on adventures and he is happy when they enjoy things with me and my clan. We don’t put one another down to the children. We have gotten pretty good at conversing about and coming to conclusions when there are issues with the girls. It was hard, but I know at least on my side, that we are doing this separate living pretty well. I have seen many different dynamics of divorce in other families… and so many punish their ex with their children, or compete with gifts… it is not helpful or healthy.

So… this week was hard, but not in the way that I thought. I thought I would be all bummed and miss the girls. It was a different feeling all together… it was more like a longing- a sad longing to be with them when they were experiencing something new and amazing- an adventure I have never ventured on. I felt a sadness for me, and excitement for them. I imagine that is how parenting in this life lived separately should go— a tinge of sad for me, a pile of excitement for them.

Divorce is hard. Life lived separate is hard. It is work… work to heal and grow and build and create. It is hard work. It is worth the hard work… I want my girls to enjoy this world with me and without. I love them like crazy- and I trust Matthew with them. I love them and I am glad they love their dad… he is half their DNA. If I told those girls I hated their dad, they would think that half their DNA is crap… and that is just not true. God made them with my DNA and their dad’s… my job is to love and build those DNA sequences into some rockin’ good adults who live well- and never feel like they lived life separately.

Divorce is hard. Co-parenting is hard. Life lived separate is hard. Life is hard. Birth is hard. Parenting is hard. Working is hard. It is all hard… and beautiful and broken and lovely and terrible. Life is hard… but we can do hard things. Do them… do this life better. Co-parent, divorce, marry, parent…. Do it all better…

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