The Mission is in the Stories…

Some say 7 is a lucky number, The Lucky Number 7. I don’t know if it holds any luck for me, but I know it holds love and pride. 7 years have gone by, I sometimes think of them as a blink- a quick moment that passed by… other times it feels as if it was a lifetime ago, a million plus years. I guess it has been a lifetime, many moons and turns around the sun.

Madeline left this world far too abruptly over 7 years ago, and soon after she guided us to begin doing her job by fulfilling her legacy. It has been 7 years, this April, since the Maddie’s Mark Foundation officially began its work. I remember way back then, before we had everything set up, we had already begun a Best Day Ever… for Naomi. I miss her. I never discount the importance of connection… that is often where the gift- or maybe the ‘lucky’ lies.

Maddie’s Mark Foundation has been working through the support of donors, volunteers, board members, grants and local businesses for 7 years… 7 years of creating Best Day Ever experiences. What an honor to be entrusted with these moments, especially knowing how important those moments, photos and keepsakes are. I don’t know what life would be like if any of Madeline’s last moments were different, though I wish everyday there were a million more moments to watch her giggle and color and explore.

These past years have been full of connections and love and hard… so many of the amazing families we create experiences for now know the extraordinary loss of their lovely. These Best Day Evers have offered a teen a prom after he missed his, celebrated the last Christmas with a purple tree and the whole community caroling, created a stage for a senior to graduate with her family all there before her stem cell transplant… a getaway to the Sagamore, spending last days at the beach, visiting ‘heaven’ on Earth, trips to dream football games, last birthday parties, keepsakes from The Pottery Place… all of it. It is a privilege to hold some of those moments in my memory and to be connected to those souls. I always, always hope that when they head to heaven, they hug my Madeline for me…

We celebrated our 7th Anniversary last week, at The Point Restaurant in Albany. In a perfect and golden lit space, we celebrated our ‘Lucky Number 7’… it was perfect, some might even call it a Best Night Ever. I love the atmosphere, the music, the drinks… mostly the energy, the energy I receive and the energy that reminds me that Madeline is right here ridin’ next to this life, telling me what to do… maybe heaven isn’t so far away.

This year I went GOLD, I mean gold is lucky and fit into the Roaring 20’s theme. I love getting dressed up, I LOVE HAVING FAKE EYELASHES. I love how fun it is to go from yoga pants, sports bras and stinky sneakers to Glam- it makes me feels special and sparkly, I love to feel special and sparkly. I gotta say when life is really hard, when days are really dark and my shoulders feel the heavy weight of grief… there is something powerful about being special and sparkly. It reminds me on those hard days, in those heavy moments… chin up, there is still special and sparkly in the world, and time moves and light comes.

I love the whole night of our anniversary party… especially when I get the microphone privileges. Usually I have a speech I think I will follow, but this year I decided to tell it from that moment, from my insides. I wanted everyone there to understand the important work Maddie’s Mark does, and feel a bit of the emotion in this gift of creating Best Day Evers. I talked too long, but I am not known for short and sweet. I was reminded that it is always the little things that blow me away, the moments not even planned that stand as the most powerful. I am ALWAYS in awe of the connections, the threads, God has stitched for us to live…

This past year I was honored to be a part of MANY Best Day Evers- parties, concerts, yards, dinners, Christmas Lights and getaways. The most powerful moment that I carry and will hold forever was not a child, but instead a moment I got to do a small thing for a grown up…

A few years ago, I was connected to a family, The Andi Family, to set up a prom experience for Ryan a patient at the Melody’s Center. I knew I couldn’t deliver the perfect date, I don’t know what teenagers do for fun… so I asked Dante, a Best Day Ever Teen, to help plan this. Ryan and his lovely Jenna enjoyed little gifts and momentos through the week before ‘prom’. They were picked up by a limo, enjoyed a nicer dinner than I ever have at Prime in Saratoga and then enjoyed the sunset at Saratoga Beach. Dante and his family set up the most perfect and romantic setup for Ryan and Jenna… complete with sparkling grape juice. It was marvelous. I never met Ryan, though his energy changed me. Ryan’s smile reminded me so much of Markel’s, you know the kind, the smile that goes from just under one eye to just under the other. Ryan passed away after receiving his Stem Cell Transplant. I remember those moments knowing that his momma was forever to be in this stupid club, and I had hoped like hell that could never happen. This story still hurts my heart… but I know where he is. This year a week before Thanksgiving I was contacted by the Child Life Specialist I used to work with when Ryan was alive. She knew that Maddie’s Mark Foundation always setup and served Thanksgiving Dinner at Albany Med and she asked me to set up a dinner for Ryan’s family. She let me know that soon after Ryan passed away his dad was diagnosed with a debilitating disease. I knew no more than that, but I knew it was important to set up this dinner and gift a semblance of order for Ryan’s mom and dad and sister. I like to think Ryan set this all up, like he told Madeline, “Hey you, dimples, can your momma make this Thanksgiving as normal as it can be for my mom and dad and sister?” and I think Madeline responded “Hell yeah”… only she doesn’t swear, she was so gentle. So up to that floor with a folding table, nice disposable tableware and sparkling cider we went. I tried hard to just be quick and set up, to let them enjoy… I even had a memorial plate and battery candle to honor Ryan. We left them to eat and laugh and snuggle as much as they could, and even with all the hard and heavy they were there and laughing and eating and thanking… I felt that it was the most ‘normal’ Thanksgiving they could have had enjoyed with all the other circumstances. Ryan’s dad, who I learned later was a beloved coach, father, husband and community member passed away from that disease. Ryan’s momma and sister have to live and miss their 2 men…

I will forever remember the importance of connection, and the reminder that our Best Day Ever families are now part of our family. I love the gift of watching Abby dance and twirl, Emily perform, Ayven lose teeth and play sports, Dante get strong and build a life, Elliot tell me about her cousins, Bree become a nurse, Cooper go to camp, Ava finish 3rd grade, Jax walk independently, Ben be silly and grow up, Faith in Girl Scouts, Kacey become an adult, Logan tackle toddlerhood, Dylan take on sports, Charlie (Charlotte) beat all the odds and Lexi travel and grow. I wouldn’t have this ‘family’ if not for Madeline and for those who support this mission of Best Day Evers, what would it be like? I never want to know…

7 years… gold and sparkles aside… Thank you. Thank you. Thank you. I thank you for the support, I ask you to continue to see life through the Best Day Ever colored glasses, I promise it is better that way. Imagine if you honored all of your best moments ever… what would life look like? Thank you for the kindness and generosity that has allowed me, my girls and my team to create these moments, thank you for the connections and the gifts. I am forever grateful and forever built better because of these gifts…

Enjoy these moments… feel free to add!

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Ode to Irish Ones…

Top o’ the afternoon to ya. Happy Saint Patrick’s Day to all…

I love March, it is a month of more light, memories, Saint Patrick’s Day celebrations and my birthday… which I historically celebrated for the month, March 30 deserves some extra celebrating. I love that we start to enjoy sprinkles of spring, bits of sunshine and a warmth you can only feel if you spent the last few months in the cold of a New York winter. The feeling of standing in sunshine on a 45* day with your boots on and your children basking in that warmth… is so different than standing in the sunshine at the beach on July 4th, so different than visiting the sunshine in Florida in February… it is different. We have waited for this… we have worked for this. We are going to embrace every.single.ounce.of.sun and light that the world gifts us. We just survived a Northern New York winter… we earned that warmth. Friday was like that for us.

Today is Saint Patrick’s Day, and thankfully we got to celebrate for a whole weekend. I left work Friday with so much excitement and anticipation… planning out the moments for the weekend and prepping clothes for the festivities. I felt like a little kid… excited for all that we do on these days. That’s the thing, we don’t really have a thing anymore. My roots and memories are based in Watertown, in the times I had growing up. I had some college Saint Patrick’s Day memories but honestly, I would have taken the simplicity of those days when I was young over the crazy drunken days. I loved those days… days with a church potluck and running around with cousins. Leaving just enough mess at the Parish Center for Sister Norah to notice, but not punish. We would religiously stand at the Saint Patrick’s Day Parade, bundled as much as necessary… cold did not prevent the celebrations. After the parade we would walk over to the State Office Building, get our stamps and head in for salt potatoes floating in a pool of melted butter, just like Molly loved. I loved watching the Irish Dancers in the Auditorium. I loved going to the corner where Uncle Sean would always be waiting, watching the State Troopers who had just marched with their families. The bands and the old ladies who would dance… it is an atmosphere that I believe only the Irish can create.

Today looks different than so many of my remembered moments. This weekend as a whole looked so different. I guess I imagined bringing my girls up with all I was blessed to experience, but we all know that didn’t work out as planned. I mean there were some red flags of my fantasy all along, the girl’s father was not a fan of Irish people, of the culture and traditions, he much preferred to lean on his Italian roots. I, myself, loved the idea of Irish Italian girls… products of potatoes and pasta… big crazy families and strong grounded faith in the Catholic Church. He liked to dress them in green shirts that proclaimed that we were just Americans “Kiss me, I’m American”. It poked me a little every.single.time they wore those, but I smiled and allowed it… I rolled over and felt like it wasn’t a good thing to be an ‘Erin’ on a day that honors those roots. I am not that ‘Erin’ anymore…

This weekend I worked hard to create some bits for my girls of the magic of my traditions. I talk about my family all of the time with the girls, I have to remind them of which uncle is the funny one with red hair (that one needs clarification), what Hayle used to call Aunt Bridget, which Aunt takes all of the pictures. They are used to visiting my grandma and grandpa… and our Aunt Jane. I searched for something with some good Irish music and food… I wanted to enjoy this weekend. We went to a Concert at Proctors with The Screamin’ Orphans. It was awesome. There was a bagpiper, Irish Dancers and a Girl Rock Band with the.best.accent.you.can.imagine. We had so much fun… my feet hurt and my brain remembered songs I heard growing up. We came home and watched Boondock Saints… because we all need to watch a couple hot Irish men get rid of the bad guys every once and a while.

This morning we woke up and got ready for Lucy’s Basketball Banquet. We had plans to go to this Ancient Order of Hibernian’s for the Irish Festival, I woke with an idea though. I offered the choice to Lucy- to go celebrate our Irish roots or make the sauce that her Grammie makes. I had this thought that maybe, because we get to choose what our tradition looks like, we could mesh our traditions, mine alongside their dad’s family traditions. They have been asking to make sauce for a long time. Lucy said “Mom, that is a hard decision”… “Sauce and Mumford & Sons”. Of course I decided in that moment that I love her more than anything in the world… or maybe equally to her siblings (we can’t have a favorite right???).

So today, in total difference than any other Saint Patrick’s Day is a Saucey Sunday… with green shirts and hands that have never squeezed wet bread or made meatballs. It is a mix of their roots, I guess my old roots. It looks different but it still felt good… funny how that can happen. We filled that big pot and made those meatballs, seared those sausages… and we laughed with our aprons on. I put on one of my favorite movies after, P.S. I love you. I felt like throwing in some Irish to the day… and weirdly I think it is the most romantic movie ever. Imagine being so planned that you planned to deliver some love after you die. I cry in so many spots of that movie, which confuses my girls, because those moments seem happy. I just wish more than anything in the world that I got that, that I got 10 letters from Madeline, reminding me how much she loves me and that she misses me. What would that be like???

I look at these years and I know that she delivered her ’10 letters’… she warned me way back when of the hurt I was allowing in my marriage, she knew… and she wanted me to move on. She built this foundation, she put the words ‘Best Day Ever’ in my vernacular. She travels on my shoulder and gets pissed when I swear too much or speed… sometimes I do it just to piss her off, it reminds me she is right here with me, mad but here.

It was a good weekend. It looked different, but is different bad? Different is hard, but it is necessary. I wish, I wish… for her. I get to go green with my girls and show them the world as I love it, as I know it. That is my forever. I love my lucky lil lady… I wish she were here to enjoy some sauce and meatballs, after a jolly good day of Gaelic and Irish rock…

Enjoy your lucky charms… whatever they may be. Share your roots… even if you just found out you are Irish from Ancestry.com. If you are Irish go out and be Irish… build community, feed your family and friends… boil what you have and pass that stone soup around… dance even when the world is heavy and awful… if the music moves you dance. When your people die… honor them, smile when you talk about them, stick together and bring them along in your life… that is being Irish, we are way more than a leprechaun, we are a way to be.

THAT was a February February…

I feel like every Monday afternoon, right about 2:35 almost to the minute, I am walking down the sage green halls at Bradt School repeating to my brain, as I huff down the hall- “Now THAT was a Monday Monday.” If a coworker walks by we often nod our heads and I might even say to them “What a Monday Monday…” and they get it. Mondays are often full of Monday moments…

What does that mean though- a Monday Monday? I think Monday’s take a lot of extra energy, a lot of mental preparation. I anticipate as I work out and get the girls ready for their days at school- that mine will be challenging. As a Teacher’s Aide we prepare for the day after a weekend or vacation, it is necessary. Mondays are often HARD days.

Today is February 28, 2019, it is the last day of February… Halleluiah. I find myself referring to February that way… it was a February February. I sometimes even say this when people ask how this month was, thankfully they know my answer won’t at all cover it all, I answer them “It was a February February”. I think I start February with the same anticipation and preparation that I do a Monday, only bigger. I have to put my brain and heart and mind in a place that they can navigate all of the emotions and grief work that needs to be done. This February was no different in that way… it was a February February.

I keep reflecting on the past 28 days, that felt like 48 long days…

Madeline has now been gone for 7 years. It has been an eternity and a moment… or 7 years. On her anniversary weekend Lucy’s Basketball League honored Madeline and supported Maddie’s Mark. I watched Madeline’s classmates and girls that would have been her peers play basketball. They were so tall, so grown. Those girls are in 7th grade… it was so hard to watch, but it is so beautiful to see them remember Madeline. Those moments don’t look hard on the surface, I don’t think they look hard to the people around me… but they are hard moments to live through.

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We welcomed a new family member to our home, Nikita Elizabeth Musto. She is lovely and well trained and gentle. I didn’t mean to add on to the family… but we welcomed her on Madeline’s Anniversary Weekend, kind of ironic to add a member when we are feeling the missing. I was loosely watching adoption sites, just like I was real estate sites… like someday I won’t live in this house. Anyway, a 2-year-old Nikita popped up, and I just kept going back to her adoption picture. My sister Molly happened to Facebook message me and I mentioned her, she told me to fill out the paperwork and see. So, I decided to be a little brave and a little stupid, and I sent the form with information for the owner to analyze. She got back to me a week later, and we set up a meeting time. We picked her up the next weekend. I think I had PTSD from the last years of Sparky Elizabeth Musto’s life, with all the blind, deaf, pees and poops and escaping. I was cautious to fall in love, to give freedom… but Nikita Elizabeth Musto was the perfect addition on that February weekend laced with missing.

The February break was hard, it was focused on Matthew travelling to Texas with the girls to be with his girlfriend’s family. I think I mentally prepared to nest the whole time they were gone, like I differed the nesting I normally do pre-February. I had to stay busy and be productive, so I wasn’t focused on all of the time I was missing. Thankfully Rick was on board to work with me on a big kitchen project. We redid my countertops and tiles the backsplash… and now every.single.time I was dishes I feel like I am washing dishes in a nicer house and it feels good.

The month was filled with bits of normal, crying and missing, some laughs and some big disappointments. I am not so great at regulating disappointment and anxiety, so waiting on an experience that didn’t get put into motion was a really challenging task for me. It is hard stuff trying to sort through life and emotions, trying to figure which are grief, which are short term and which might be a part of a grudge. It Is hard work trying to stay afloat in all of these emotions and experiences…

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In the midst of it all I was watching a local firefighter fight for his life, while his wife shared his story. This healthy, strong father of two developed a Sepsis infection and was given a 5% chance of survival. I saw her words, begging for prayers and hope, sometimes very specific prayers for kidney function or to heal his hand. He underwent many surgeries, without being aware, including one that his wife Chelsea shared the surgeons prayed over him, and the flesh-eating disease they were sure it was, was no longer when the surgeons opened his skin. He is a miracle, Josh Woodward is a miracle. I have thought over and over this month- God is letting us, literally, watch a miracle as it happens. He is letting us see prayer heal, letting us see prayer save. Through the window of social media we can watch daily as one of God’s miracles heals and prepares for the life God has planned for him. #WoodwardStrong has become an anthem here near Albany, NY reminding us to have hope, pray big and see a miracle for what it is- a miracle.

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This month I also got to attend and help support The Dance to be Healed, which is an amazing night of children who have travelled on the Childhood Cancer Journey. A few years ago, a Nurse married his cancer patient, to lift her spirits. The world fell in love with that video, and the event now raises funds and awareness, but honestly, it is a night for all of those kids to dance and enjoy life in a space surrounded by others who get it. The best part, they aren’t being ‘treated’ for cancer, at least not with chemo and poison… but instead they are being ‘treated’ with dancing and flowy dresses and fun foods and a night off from the cancer world- they just Dance to be Healed.

This miracle and that dance are such positive and beautiful events in these days… we need those bursts of light to hold faithfully on to this journey. The thing is… they are hard moments for me too. It is hard to be the mom of a child who died of cancer… it is hard to know that the miracle God planned for Madeline didn’t look like the miracle God has gifted Josh Woodward. It is all just hard… it is all just so hard.

In true February form this was a February February… right to the core. The mix of emotions, the new members of our family right next to the missing… disappointment laced with hope. I always know this our pain rides right next to our joy, there is no other way. These are the very last moments of February 2019… and I am welcoming March with open arms and an open heart. I am praying that March is softer, lighter and of course full of Birthday magic with it is time to turn 37, I think 37, whatever I am turning. So welcome March, let’s dump this February in history and Spring along… to lighter and brighter days.

 

Super Bowl and Gathering.

I can honestly say that I never really cared about the Super Bowl, maybe there was a time I was slightly into it, but never was it a big deal. On the other hand- I love gathering. I love anything that involves squishing people into a space to laugh and share and eat and drink and enjoying their time. The Super Bowl is a good excuse to gather together… eat, laugh, watch, enjoy time.

In old times, before and after my girls were born, we would either host or pack up and go to friends for nachos and chili. I remember one Super Bowl, I think I was pregnant with Lucy, we went to an unmarried friends’ apartment for the gameday festivities. He had a big fancy TV with this speaker bar thing in front of the TV- you know the electronics you get before you have kids. Imagine two toddlers, lots of electronics, a small bag of toys from home, snacks and a million “No, don’t touch that!”’s were spouted. It was a rough one… but we had fun and I am sure I crashed hard that night.

Super Bowl Sunday holds powerful, beautiful and painful memories for me. On Super Bowl Sunday in 2012 Madeline made her First Communion and Confirmation. In a church filled with many Catholics anticipating the big game- looking forward to the inevitable silly joke the Priest would tell about the teams playing… instead those parishioners were part of a beautiful and lovely 5-year-old with terminal cancer entering adulthood in the church. I wonder what those people thought, if they still think of that Super Bowl Sunday. We left the church and went to an awesome gathering, a party full of people and Italian food and cake. I remember so many people, and the worry we had for Madeline… did she drink enough water, did she need anything. I remember feeling so grateful that on this scary yet beautiful day we were surrounded- the world gathered. Madeline was quiet, I know it was overwhelming for her, I know she felt sad to not be herself. I wish she got to fully enjoy her First Communion…

We left the party to head to Lake Placid for our ‘Whole Family Adventure’, a train of cars headed up into the mountains. I remember hugging my friends as we left for the mountains- begging them to enjoy the Super Bowl, just as they would have if this weren’t happening. I told them, thank you now go have fun, I think I wanted to know that they weren’t breaking too. We were all breaking though…

I don’t remember talking about the Super Bowl that night, I don’t think anyone put it on the TV, or maybe they did and I didn’t realize. I have no idea who won, who played… if the halftime show was scandalous or amazing. I have no recollection of the game. I feel like we were all trying to just be present and together and figure out what to do with the fear and pain and brokenness. It’s like the Super Bowl didn’t happen in that cabin in the Adirondacks…

The thing about the Super Bowl is that thinking about the game and that day makes me sad… but the part about gathering and spending time together is the part that is important to me. I do not care about teams or goals, I never remember to do the pools, I don’t know the rules of the game really… but I love how it brings us together- I love to gather. I love any excuse to eat nachos, drink wine, play games, tell stories and build community.

This year I have a goal to gather more… to do what builds me better. I know this time of year impacts me… I don’t even need a calendar, PTSD doesn’t need a calendar. My brain and heart would break when February comes around even if we stopped writing down the dates- PTSD just knows. This weekend I made a point to gather and adventure… not to settle in and clean and Netflix binge watch. I was really tired today, but I felt full and not empty, I felt a bit of mending- though not fixed. I know what community does to my heart and soul… what gathering means to me. I guess to some they loved that it was Super Bowl Sunday, some could not wait for the Maroon 5 concert… but for me I loved eating and laughing and squishing into my tiny house. I love the importance of Gathering, of building and connecting… and on an anniversary that breaks me, I chose to insert some building blocks.

Gather… laugh, cry, tell stories, eat, drink, move and enjoy this… even if it is Super Bowl Sunday, even if you are missing 1/3 of the most amazing Musto Chicks…

DO SOMETHING…

 

“So, I shook my fist at Heaven

Said, “God, why don’t you do something?”

He said, “I did, I created YOU.”

If not now, then when

Will we see an end, to all this pain.

Oh, it’s not enough to do nothing- It’s time for us to DO SOMETHING.”

 

October 20, 2017- The day DIPG stole Devin Suau’s life here on Earth.

I got to sit and talk with Devin’s mom talk about his life, about the perfect timing of his birth and his ability to sense her pain and soothe her. He was the youngest of 4 boys, a definite accidental 4th– but then again life is never an accident. He loved super heroes and was a naturally gifted snow boarder- at the age of 6. Christine, his momma, described him so beautifully, his kindness and simplicity. He reminds me a lot of my Madeline- minus the snowboarding, she would have definitely stunk at snowboarding. Christine is doing something, something big.

Fast Forward to October 20, 2018… one year of missing, one year of the pain and broken and wondering… Devin died one year ago.

Christine described the last hug she and Devin would have, what it felt like and how he woke up and initiated that beautiful hug. It was like a comforting hug to remind his momma he was still carrying her in the pain. It was her last hug with the Devin that she carried and built and loved and laughed with, the last. The pain of those moments is enough to knock anyone down… rightfully so. The brokenness that is left behind is big enough to fall into and never return. The missing she now owns is enough to feel like your entire self is missing… like you are no longer here.

What you do with the pain, the broken, the missing is part of the process… and I believe part of the purpose. DO SOMETHING. Those are powerful and bossy words, words that require owning something and working to change it. When you experience things in life they point you in a direction, when you live through the DIPG journey you know the direction you must go. Devin wanted his momma to DO SOMETHING…

October 20, 2018 is not only Devin’s Angelversary, but is also a day to spread kindness. Often you see pages and fundraisers and stories, you see people in the community broken or ill, and you want to DO SOMETHING but you may not know what to do. You feel compelled to DO SOMETHING but the world gets in the way, your bills steal all your extra money or you have 100 things on the day of the gathering… or maybe you aren’t sure what to do. I am giving you clear directions as to how you can help DO SOMETHING… and 100’s of people out there DOING SOMETHING is world changing. You will know that you are a part of something bigger, a story with a purpose- a little boy that was created to change something and inspire people to DO SOMETHING kind and good and beautiful.

DO SOMETHING.

October 20, 2018 is a day for you, all of you, to DO SOMETHING. You can keep it a secret and just put the kindness and light you just brought into the world in your soul pocket- or you can share it here for Christine to see Devin’s impact. Either way- DO SOMETHING… something BIG or little, something easy or difficult, something outside your normal comfort zone. Who knows what God has planned for your act of kindness- maybe you’ll see the impact or maybe you will start the ripple. Go out there is DO SOMETHING… a coffee for a mailman, a snack for a homeless person, bring hot cocoa to the soccer parents, a chat with an older person, Dinner delivery to a sick family, donate to a charity… whatever- just DO IT. Share it or don’t… if you do #whynotdevin and smile knowing Christine can see it and know her son’s impact.

I am asking every.single.one.of.you to share this and DO SOMETHING… because, in the words of Matthew West, ‘It’s not enough to do nothing.”

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Forever Kindergartener…

20180906_060449.jpgThe horse tee shirt, a blue cardigan and those Gymboree jeans, best first day outfit ever. On the eve of school starting the clothes are all laid out and we are ready to get dressed. The little LL Bean backpack full of supplies is next to the door. The envelope for party money is labeled, the pencil box is full of fresh Crayola crayons, we don’t do Rose Art here at the Musto Estate. I think the Ticonderoga’s are sharpened, if not there are sharpeners in the classroom. No lunch packed, the idea of a lunch on a tray and milk in a carton is way to cool for a packed lunch. I am thankful that the first day is a half day AND I get to go too. Excitement and anticipation take over… a whole new era begins on that first day.

I am excited. I am nervous. I have never left my girl for longer than 3 hours at school. I don’t let my anxiety and tiny piece of sadness overtake the excitement. My lovely is so excited- to eat lunch in a cafeteria, to ride on a bus and to make new friends. I go to Bradt, she stands in front of the sign- officially entering Kindergarten. That smile… those dimples. We walk in and walk all the way to F9, the Lime Room, one of the farthest rooms in the school. I think about how those tiny little kids’ legs will be expected to find this room, to walk that hall over and over. How will that go, how do these teachers get the kids to walk that much? What if she gets lost…

We enter the Lime Room and take a seat, in tiny short chairs. The teacher has a white shirt and lime green beads, I think a flower in her hair. I think to myself, this is the perfect place for my lovely, I am a lover of big accessories and flowers in hair. We sit and listen to the little presentation- about the day, paperwork, allergies, and housekeeping for Kindergarten. It is time to color a sheet, my lovely opens her pencil box and starts. A little girl near by raises her hand, I can tell she is a bright light, she asks “Can I color with all of my colors?” I am smiling, this is going to be a good place for her…

The first bus day is Friday, our driveway is the bus stop, all are waiting in front- me with my coffee and camera, the kids with backpacks and running feet. Kindergarten begins…

September 2011.

My daughter Madeline entered kindergarten in September 2011, a 5-year-old dimpled lovely with the most compassionate heart and most beautiful soul. She loved the bus and lunch room, loved all the work in her classroom. My daughter Madeline would run in circles around the playground with her friend and tell me ‘Mommy I can run faster than a cheetah’. My daughter Madeline wanted to read a book, all.by.herself. She read me a book the first week of December that year, and I thought how awesome it was she could read. I wondered how many books she would read to her sisters…

My daughter Madeline came home from school singing the songs she was taught in music class. She loved anytime that I got to come to school, I sure loved those hallways. I remember her singing, in her tiny raspy voice, ‘You are my sunshine, my only sunshine’… and I helped finishing her song. She turned to me and giggled- ‘Mom, you know that song too????’.

I adored the little notes Madeline wrote me, I love how she wrote her name… never right on the line, with a mix of upper and lower case. The best time was when Mads got off the bus, she would run right to me, like she hadn’t seen me in weeks and hug me. We went inside, the littles would be napping, and we ate snack and watched Ellen. It was down time, we don’t do much right after school, still to this day. We all loved kindergarten.

In November and December Madeline had a few random fevers, she missed me at school and she often fell asleep in the Lazy Boy in our living room, sitting up, instead of going to bed. I talked to our doctors, worked with the school and we worked to get through it. I reminded myself kindergarteners often missed their parents in December… help her have tools and be okay. We knew we would get through this. I remember dropping her off and walking Madeline in. I would keep it together, and walk her to Mr. B and he would start her walk down, I would stay behind the corner and try to keep my shit together, sometimes I would cry there most of the time I held it together until I got to my Jeep. I would sob…. I couldn’t believe what it felt like to leave her and see her so upset. January came and the homesickness got a little better, but she had a couple random puke episodes. Madeline sometimes had anxiety, like her dad, so it always fit that mold. She would stay home those days and we would enjoy a fun crafty day.

I remember Madeline puked in my bed on the morning her dad flew to California. I chalked it up to anxiety and sadness. We had the best stay home day that day. Madeline planned a whole welcome home party for her dad- cake, homemade streamers, a cracker tray with kid cut up cheese and music she chose. She showed me in that time that she was a crazy good party planner- sadly she only planned one party.

At the very end of January, I remember getting a call from the school nurse, I was literally driving by Bradt School and pulled in to pick up Madeline. Madeline was dizzy during PE and really not herself. I brought her home, hydrated her and we stayed calm until dinner. I remember that night, when we ate dinner, I called Mads to the table and she had a hard time walking. She thought it was kind of funny, that her body wasn’t doing it right. I really thought she was still not feeling great, and again attributed to water consumption. Matt got a little over worried- and said “It could be a brain tumor”. I assured him, that that would be almost impossible- that we need to address the bits and not jump to that. It wasn’t uncommon for Matthew to jump to the idea that a symptom or illness was worst case scenario, so trying to talk him off the brain tumor ledge was not uncommon. We all went to bed and I knew I would call her Pediatrician the next day, we would have to get through the weekend first though.

The weekend was pretty ok, Madeline seemed happy and healthy. I remember we visited the Albany History Museum and saw mummies for the first time. It was a really great weekend and for a couple days we were back to ‘normal’. Monday came and Madeline went to school.   It was her last day… ever.

I called the doctor’s office to set up an appointment, after describing the recent days the nurse said “Write down any symptoms you can think of and come with them”. Suddenly… my brain started connecting occurrences and symptoms. I could see a change in November…

She saw her doctor, and then we ended up at Albany Med Emergency Room, very quickly her legs didn’t work. It was like my ‘normal’ healthy daughter’s left side of her body didn’t want to work anymore. It was so fast…

I can now see back to November little changes, but they fit the normal kindergarten things. I can see it all so clearly now… the thing is hindsight is 20/20.

 

Today… Madeline would be in 7th grade. She might be in chorus, maybe love to do pottery. Madeline, I imagine, would love science and lab and hikes and adventures. I imagine, Madeline would love school and be a builder not a breaker. I bet Madeline would be joining the Track team an running like a cheetah. I bet she would love reading and have polished off all the best books, maybe we could even share books. I imagine her locker would be covered with pictures of her cousins and the lake and sunsets and fishing and maybe, Justin Beiber. I guess probably not Justin Beiber, he was so cool back then and now not so cool. Life goes on… popular artists change. Madeline will always be a kindergartener who loved Justin Beiber, riding with training wheels and singing simple songs… but that is the life of 5-year-olds. Madeline is forever 5….

 

School starts, busses come, lunches are served, students wear new undies and socks, parents take pictures… and a new school year has begun. My daughter Amelia starts Middle School and Lucy starts 4th grade- time keeps going, the world keeps spinning.

Cancer stole her kindergarten graduation, her Easter party, her summer’s. Cancer stole her whole first, second, third, fourth, fifth, sixth grade years… it stole so much. Cancer stole her bus rides, her school lunches, her first day’s, her days done, her playground time. Cancer stole my lovely…

School starts… enjoy the growth, be grateful, be happy for your child and you… drink a mimosa with your friends after you go for a run and then run to the bus and grab your child and kiss them in front of your neighbors… scoop them up in your safe arms. Listen to them tell you about their day and enjoy them… take it in, sniff their sweaty foreheads, check out their skinned-up knees and let them tell you about the kid who drove them nuts that day, or how long it took for the bus to come home. I love seeing my kids grow, but every centimeter my girls grow is a centimeter that Madeline didn’t grow. She will never grow, she is forever 5, forever a kindergartener.

As your child goes off to school, as mine do, embrace it. Embrace all the parts, the growth and independence. Embrace the missing for 6 hours… I promise you will be fine. I spend all of my time missing…

Enjoy it. Embrace it. Smile… even when it is hard. I do.

As school starts I have a forever 5-year-old kindergartener, a 4th grader and a Middle Schooler. I will smile and take pictures, I will think about how lucky I am. I will move along, but I will cry and hurt in my smile.

Cancer stole all of that…

Cancer Stole- Her

Today the girls and I drove home from Lake Placid. We drove the same route we drove back to our home in Rotterdam 6 and ½ years ago, only this time it was just the three of us.

Madeline was diagnosed on a Thursday in the morning, we left Albany Med later that day to go home, only after stopping at Target to grab steroids. We went home to our family there, they did a pretty good job of pretending they were happy and okay. We were firm- we weren’t going to make Madeline uncomfortable, well any more uncomfortable than she was. My lovely, independent Madeline could no longer walk like she wanted to, she couldn’t tie her shoes and she couldn’t button her wrinkle free cardigan. She watched her sisters and cousins run and play… and she knew she couldn’t. In a matter of… pretty much 48 hours DIPG stole so much from her.

Our family left for the night and we settled in, and tried to enjoy time and keep Mads comfortable. Friday, we woke up with intention- we needed a cabin for our whole family, her Grammie suggested she make her First Holy Communion, we set up a photography session with the best, and many hands got to work on changing the nursery into Madeline’s own bedroom. All.in.one.day…

The photo session was hard, it was so bright and light. I didn’t feel that way, I felt like I might puke. I smiled and I watched my girls together… Madeline would have normally joined in to make her sisters laugh but she just did her best to smile. Amelia and Lucy didn’t understand. They laughed and ran around… I struggled. The best moments were captured and I am forever grateful…

That night was Madeline’s big ‘sleep over’, she hosted her sisters and cousins to watch ‘Rio’ and they ate junk food on her ‘new’ bed. She was tired but I know she loved being squashed on her bed with her favorite people God made for her. I guess I should restate her ‘sleep over’, we sent everyone back, after the movie, to their hotels so we could get sleep. I didn’t sleep for those days, I just lay there uncomfortable, feeling like I had a stomach bug. Grief and fear can look a lot like a stomach bug.

Madeline woke up the next day, Matt was on the floor next to her, I heard her say “Daddy, Meme and Lucy can’t mess up my bed!”. I smiled and wondered how long has she desired her own neat space…

On Saturday Madeline made her First Holy Communion and Confirmation. She looked beautiful. It was hard, trying to keep her hydrated as others ran and played. I can see her and feel her in her tiny white dress…

On that day her official name, in the Catholic Church, became Madeline Elizabeth Madeleine Sophie Musto, she chose that from a list I prepared for her to choose. I thought it was lovely and soooooo long… I told her that it is a long name for a kindergartener. I tried to make a funny moment and I am sure it was lost…

That day was exactly as it should be… even in the pain.

Somehow the world pulled together a party with 2 beautiful cakes and family from all over the place. We enjoyed it the best we could. We headed up to Lake Placid. I remember Amelia and Lucy rode with their grandparents and we were all laughing and being goofy at the gas station. We had all stopped to head out together, my cousins, parents, in-laws, and beyond. Grabbing snacks, going to the bathroom and filling up on gas. Madeline was in the middle of my backseat, one aunt on either side. They got her laughing, like the gut laugh, and I now know that was the last gut laugh. The very last one…

We arrived in Lake Placid to an amazing Log Cabin, with bedrooms and toilets galore. The kitchen was so inviting and the living room became one of our last perfect moments. Sunday was Super Bowl Sunday… and yet I didn’t even know what kind of football was going on. We just focused on Madeline and building moments…

We adventured around the Adirondacks… to the Saranac Ice Castle, pottery painting and Ben & Jerry’s. When we all made it back to the cabin in the woods, we settled in and welcomed our cousin to read and perform for us. He read Madeline’s favorite books and had the best sound effects. I will always remember how she shimmied up closer, off my lap, to him as he read. My last memory of Madeline smiling was sitting next to my nephew Nicholas as they listened to Lucy repeat the “Clomp, Clomp, Clomp” in the story, just like she did at home. I miss that smile… I will forever miss that smile.

Matthew carried Madeline to bed, I watched him. I remember her head on his shoulder as he walked to the bedroom. The next day Madeline woke up with extreme vertigo, she got sick eating pancakes. I remember bathing with her, thinking in my brain that this must be my job now, to bathe with my lovely. I didn’t know that it was her last bath…

We travelled back to Rotterdam soon after that bath. Matthew had called her Doctor and let her know. We purchased Dramamine and hoped that would keep her comfortable for the drive back. I remember all those twisty roads… praying she would be comfortable. She made it… today I drove that same road, that whole route…

We got home and I positioned myself in the recliner with Madeline on my lap. If I moved, even to itch my neck or adjust my hips she would wake and get sick with vertigo. I stayed in that seat with her for… so many hours. I remember the women from Make a Wish coming to talk about doing a wish to Disney. They told us they only needed hours to get us there to enjoy our time. I just kept thinking Madeline is so not a Disney kid, but if it works then it is meant to be. I sat still as a statue during that visit from Make a Wish. I remember hearing my friends stop and someone telling them it wasn’t a good time, I may have yelled to them, I can’t remember. I just sat still as I could be… until Dr. Porter stopped for a house call. I feel like it was 9pm when she got to our house, 25 minutes from the hospital. She was so calm. She made me make Madeline uncomfortable so she could assess her. It was painful. I watched Madeline in pain and stress from the vertigo. Dr. Porter told us she would see Madeline tomorrow to start a line and administer drugs for vertigo. She calmly and clearly told me that this could be Madeline’s life for a long time. She told me to sleep. I had not slept since Thursday night. She told me that the drugs they would give Madeline may or may not help her…

I took Tylenol PM to fall asleep focused on the idea that the medication they had might not help. Madeline had transferred to Matthew’s lap and I tried to sleep upstairs. Downstairs Madeline had a few episodes that felt like she couldn’t breathe, I heard and rushed down… it corrected itself and I tried again to sleep. I would look at my kitchen and see my little sister Molly and Raquel working on Madeline’s 100 Day project. I know they were trying to stay busy and out of the way…

The last time I ran downstairs I think my sister was calling me… I remember running downstairs. I remember the sound I heard. I remember Dr. Porter telling us “When the tumor progresses her breathing will change, it will have a click, at that point she will no longer be Madeline”. I heard the click… it was time to go to the Hospital.

I put on a Potsdam Hoodie and ran out the door with Matthew, I knew. I knew, somewhere in me, that it was the last time she would cross that threshold. I knew that Sparky would never see her again… and I loaded in the car- maybe with my purse maybe without. Matthew drove fast… and we called Dr. Porter. We pulled up to the ER and someone must have parked the Jeep. I don’t remember. They were ready for us…

Madeline was admitted to the same exact room Lucy was in only 2 weeks prior for a tiny concussion. We got to the room and alarms went off… we were asked about DNR’s and I kept telling them we aren’t ready for DNR’s she was just diagnosed. Finally, we were allowed next to her, we had called a friend to pick up the girls and bring them to us. Madeline looked so tiny, so ready. I remember singing to her, in front of a male nurse or EMT or whatever… I told her “It is okay to go, we will be fine. If you can wait your sisters are coming…” and she waited. They moved us across the hall. The nurses had created a big bed for us, by connecting two beds and putting sheets down. Madeline was in the center, I was to her left and Matthew to her right. Amelia was next to me and Lucy sat next to Madeline’s feet. We talked to her… we told her it was okay. We sang her to heaven…

ABC’s, You are my Sunshine and Twinkle Twinkle Little Star… all of her favorites… and soon she was gone. I had laid my ear on her chest and could hear her breathing slow and her heart sound like it was flooded. I remember that moment… yet I don’t know what time it was.

The moments after are hard… all of them, even this one. I remember feeling like I could not leave there… I had never left her for long…

It was one of the most beautiful and painful moments in history, at least in my history. I sit here tonight and have again entered that time that makes it impossible to get much done, that makes me feel it all. I miss Madeline. I hate cancer. I hate DIPG. I hate what cancer stole from her, stole from us.

Cancer stole my daughter and all the years she could have changed the world. Cancer stole Madeline’s laugh and breathe and heartbeat. Cancer stole Amelia and Lucy’s sister and role model. Cancer stole her perfect dimple and awesome attitude… but it didn’t steal her soul. Madeline’s soul is still hanging out with us, guiding us and building better for others.

This is a hard spot to enter. I let myself today, because it is September. I let myself enter this space and share in hope that this will change… what if sharing this changed something? What if a new set of ears hears this and they can change it… what if that is you? What if… soon we can talk about how far we have come? That is all worth the pain…

Read. Share. Comment. #GoldStrong . Yell. Create Awareness. Change this…

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