Feet to the ground.

A few months ago I got the.very.best.compliment.ever… “Erin you are so much less frenetic than you have been.” I was almost giddy to hear those words…

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Rewind to last fall, to Boston and a DIPG Momma retreat… a weekend of reiki and art and connecting. Somehow, I was lucky enough to have 3 different Reiki sessions, all by different and amazing women, each leaving me feeling relaxed and ready for the next chapter of me. Each session may have been VERY different, the core message was the same getting grounded. It is pretty hard to hear someone acknowledge the way you feel and describe it so well “Erin, I see you floating away, like you are holding 100’s of balloons and flying away, up and away.” … or just that my feet are not touching the ground and I need to think and be cognizant of this, and keep them firm to the ground. I came back to Albany with a sense of need to get grounded and back to me, solid me.

Fast forward to working and taking steps to stand firmly, with my set of feet wholly on the ground. I could see the lack of order in my brain, the piles of disorder and how my mind just jumped from one pile to the next. I used to be much better at processing piles and navigating very stressful times, but last fall I felt pretty lost in the messiness. It’s been a hard go at life these past few years…

Acknowledging and taking actions to support myself better, to feel what I need to feel, to say ‘no’ to things that aren’t necessary, and breathing, just breathing have all helped me get some of my ducks in a row, to get my feet standing on the ground more often than floating away. I started to feel this spring that I had a couple ducks that were waddling in the same general direction, while the others were busy eating, chatting or heading the other direction… at least I think I have all my ducks in my vision. I started to feel a little more like me, although it took a few meltdowns (The Mother’s Day Meltdown of 2019) and a lot of emotional cleansing (which looks a lot like a crazy lady crying so hard that not one word makes sense and when she tries to stop it sounds like she has lost her air for hours)… the spring was a hard time, but it started to feel a bit like healing. I started feeling things I had to move forward from, things that I couldn’t take on back then because I had to raise my girls and function. It wasn’t missing Madeline this time, but feeling the pain of my divorce and how much I was hurt. I was far to quick to move and forgive, that when I stopped moving on and felt the pain it was heavy. I would again find myself crying as I drove through the Pine Bush, just as I did for years after the first betrayal. I tried to move on quickly and get to the next me, but this spring reminded me how healing works. Healing hurts, until it finally starts to not.

So when I sat with my Laurel, My Compass, this summer and she said “Erin you are so much less frenetic than you have been.” I knew that I was doing the work. I started to feel a little proud, maybe a tiny bit cocky about the state of ME. I was reminded when the world again didn’t go as planned… when I was left working hard to find my new path and it wouldn’t just show up, when my nephew broke all the rules entering the world… when I struggled to support my girls… all lessons and reminders of real important. A lot of stresses and struggles, riding right along so many amazing and simple moments. I started to feel frenetic again, not grounded. ‘My Compass’ agreed that I was hanging out in that crazy space of not completing a thought, or following through with anything on a list. I am back to that place of floating away, of not being grounded. I see it, I know it and I am going to change it. I started Yoga, Beachbody Yoga, to get my body stretched and aligned… but what I love is seeing my feet on the floor when I do downward dog, seeing them touch the ground as I push them down and my hips up. I am actively engaging in being grounded when I do downward dog…

I guess today I needed to sit and write these pieces, I have avoided it all. I have missed writing but at the same time knew that writing some things make them more real than my brain feels like considering them. I am looking at my feet when I do yoga, watching my toes grab onto the mat, acknowledging my attachment to the ground. I am working hard to feel and get through what I can, and I am trying to feel present and helpful in my nephew’s journey. I am trying to redirect my thoughts that are not important or have been acknowledged, there is no need for that pain if I felt it all. I am working to stand strong as ME… to feel grounded. I am listening to ‘my compass’ because thankfully I trust her. I started there, in that solid trust, that knowledge of her place in my life. I have built back up from that point…

This life is hard. These days are long, or short, but they are unreliable, so we must work on who we are through it all. Often times it is just a choice to see, to give perspective a chance… we can see a life of crap and loss, a buncha’ pain… or we can see the lights, the tiniest little nightlights and the beautiful sunshine lights as gifts through a moment that sucked. I am writing… that is a big step for me. I am working all the time on that connection of my foot to the ground, that choice to get through the pain and hard… and live life well. I am working on grounding me, so I can keep on building me.

 

Mark’s Mark…

This week the world lost a very special 2nd grader at Bradt School. His smile was the gateway to his kind and compassionate soul, a really thoughtful little boy. His teachers loved him and he was a role model for character and workmanship in class. Reading about his love of baseball and his sportsmanship, testimonials of his smile and way of always being positive feel, to me, so much like Madeline.

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Mark’s 2nd grade Teacher, Mrs. Maguire, is a wonderful teacher who values experiences and adventures that go along with learning- more specifically service in the community. She and her students chose a charity each month to work to support either raising money, awareness, participating in walks, making lunches for Habitat for Humanity and helping Maddie’s Mark with Thanksgiving bags for families at Albany Med. It is amazing the amount of time and energy they put in, all the while learning important lessons about life and the need for service. Just a couple weeks ago Mark’s whole class worked in the hot sun to paint and freshen up a garden at our school to honor Deb Roman, an amazing ENL teacher who died in a tragic situation. I watched as his class spent the day outside painting and working to restore beauty to that memorial. Every Thursday you could find Mrs. Maguire’s kids in the hall outside the nurse’s office, waiting to be handed the heavy bags for our backpack food program. They would then head out to deliver the food between all of the regular work they had that day. You could count on seeing Mark happily delivering, painting, writing, creating, making lunches… whatever was asked, he was a happy one.

I have many memories of Mark, with that smile, most of them just seeing him walk down the hall or doing writing work in his class. In November when I was asked to talk about Maddie’s Mark and the service we do, I got to see Mark’s penmanship skills. Mark labeled and prepped all of the cards and gift cards to be delivered to families, and his penmanship skills topped many of the adults I know. I will forever see Mark smiling down the halls of Bradt, just as see Deb Roman with her soft smile and Madeline walking in front of me to the Lime room. His spirit will never leave Bradt school…

On June 25, 2019 I prepared my walls, I checked myself, I wrote my piece and I got myself an iced coffee and prepped to do what I had to do to get to bed time and honor Madeline. The morning was a different one than normal, moving furniture and noticing extra guidance and administration coming… but my brain didn’t put all of those things together. Just before send off the rain started… and it was RAINING. Teachers were noticing the presence of extra people and a few people had tears… I could tell something was coming. I stood in the hall and tried to figure out what the best thing for me to do, jet out and find out later or stay and hear. I decided to stay, but first send off the kids. We all went outside, but it was pouring… I decided to just get wet and laugh and squirt the buses as they go and wave out of excitement and missing. When all of the teachers got back into the halls we were called to the library, when we were all there our Principal shared the news that a little while ago Mark Lombardi’s dad called and let her know that our little 2nd grader, Mark, had died. What a surreal feeling to be in a moment that others had to stand and hear that your daughter died. I decided quickly to go home and celebrate Madeline, she had Mark now.

The morning of June 25th I wrote about Madeline’s birthday and a bit of a soft rant about spending your time wisely. Around lunchtime on June 25th was reminded of the importance of this. On June 26th an amazing recently retired Speech Teacher spoke at the send off breakfast, she had many funny points and profound points, but through her tears she talked about getting older and how our parents and families get older, and how you need to choose the important stuff… time and health are not ours forever…

Three messages in 24 hours, take that for what it is. Time and health are gifts, not promised to us. Don’t put off life, don’t waste your time being busy. I see it, all the time. I have lived in a world that surrounded us when it was hard, allowed their faith to be strengthened, took time for their family… and I see those same people fill their time far away from that now. I feel it all the time. Work harder… on Monday afternoon Mark was swimming and smiling. On Monday morning Mark was enjoying a half day with his 2nd grade friends. Today is Thursday…

Talk about Mark. Share stories, share laughs. Make his favorite foods and think of him. Remind your son or daughter to play baseball like Mark- happy to be in the game. Take time to write neatly, think of Mark and all of the Albany Med families who received those cards. Smile all.the.freakin.time. Be a role model in a room full of jerks, be the one that others can look at and want to be more like. Love your family all the parts of it. Love your sister, or brother… I promise when they are gone you don’t want to wish you did it better. Enjoy simple Best Day Evers, simple. Spend your time wisely… it is a gift not a promise.

Mark. You have made a Mark in my soul, and I will do anything I can to help leave your Mark. I will stick around and tell your story. I will see you in the hallways and I will smile while I remember your smile. I will forever honor your spirit and soft gentle soul…

 

 

I am including Mark’s GoFundMe page and obituary. His family could use fund and prayers, and knowledge that Mark’s short life will serve as a model for you to live yours…

Mark Lombardi Obituary

Mark Lombardi GoFundMe

Thirteen.

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Thirteen. A magical age when one enters the first level of adulthood, in the minds of anyone under the age of thirteen. I remember looking forward to turning 13, like things would really change. In my mind, like the snap of fingers it would all make sense and these next few years would be simple. I was on the brink of something big, something really profound. I was 13 and in love with Garth Brooks, oversized tee shirts and FHA… and let me tell you nothing got easier, especially fitting in. Life is like that… imagine one thing and learn that nothing we imagine happens how we imagine it.

Fast forward through many awkward years, college, Matthew, marriage and Albany… to June 25, 2006. We welcomed the most perfect 9-pound 6-ounce baby girl- Madeline Elizabeth Musto to this crazy brutiful world. We welcomed her with a blissful ignorance of time, the notion that she would be here until long after we left. That is the way we welcome fresh humans, with the blind love and knowledge that we will spend the rest of our lives loving and living in a world with them. What is the alternative, though? The alternative is so very sad, so not blissful and unaware. I quite miss that blissful ignorance, that gift that comes with fresh humans, that and the smell of a fresh baby’s head as you rest them on your chest and sway and bop…

I should be kissing my 13-year old’s forehead as I head out to work, maybe she would come with me and help in her old teacher’s classroom. I should be arranging a party or experience for teens, something that involved a bit of independence and a pile of trust… maybe even a treat of Starbucks and pedicures. I imagine she would be tall and have the best smile, accented with her big dimple. I imagine her teeth would fill her grin and that would be backed up with that infectious giggle- a little deep and rumbly, with a squeak here and there. I should be guiding her to new adventures, through friendship issues and difficult choices. I should be planning a trip to the lake, and setting up to remake the sunset picture with the 3 girls…

The alternative is so very sad. I should be… but the alternative is so very sad. The alternative is messaging many friends and family a birthday plan for June 25, 2019. The alternative is deciding to do it a little different this year, this year of disorder, to go to the beach and then gather a pile of important people in my back yard and celebrate the sacred space around my table- with pizza and cake. I thought about a party at her spot, but decided to do what Madeline loved… sunshine, sand, friends, pizza, backyard fun and best nights ever- the simple kind. What I wouldn’t give to throw a 13-year old’s birthday… to buy silly expensive Starbucks, fancy pedicures and maybe Hibachi with friends… what I wouldn’t give to have the alternative.

I miss her.

I wish I got to hug her today, to brush her hair off her face and tell her not to be a butthead. I wish I got to turn on Pandora and get her to dance with me in our little kitchen. I wish I got enjoy my 13-year-old on her birthday, celebrating the blissful and unaware state I got to live in way back when…

Today- go out there and do something kind. Every little kind thing counts. Assess your time, your family. Life is crazy, don’t waste it being busy. Say no to something today, with no guilt or fear, just say no and enjoy your time. This is a tough one… imagine what you want your child to be when they grow up… and know that some don’t get to grow up. Everyone loves sports and commitments, but are those sports and commitments building your family or stealing joy from your family. Do not put off time with your family, and be more aware of how you spend it. That is what I ask of you all today. Do a kind thing and remind yourself to raise your perfectly exceptionally mediocre kids and teens to be really good human beings that is all that matters… Madeline was the most special, simple and compassionate human being, bring her along today.

 

Happy Birthday lovely… enjoy the cake up there in heaven.  Miss you like crazy, but I know you are right here riding along with us Musto Chicks reminding me of the speed limit, telling Meme to be quiet and snuggling Lucy…

I hope you dance…

On Saturday we got to attend Amelia’s Dance Recital, a day she had been preparing for since September. I was excited all week, reading and rereading the list and times for the event, making sure my brain wouldn’t mix up times or forget to have her pack extra bobby pins. It was really exciting because my parents got to come watch her dance, a treat since they live hours away. It was a good day… we got some pictures in front of our tree, loaded into the Jeep and headed off to Voorheesville.

In January I remember sitting and watching Amelia dance through the window into her studio, and hearing the song over and over. She would start to get tighter while I watched so I tried not to make her nervous often. The song they chose for her lyrical class was a powerful song, one that has become a bit of an anthem for me these past years. The song not only evoked powerful emotion while I watched, it reminded me that He wants me to more than hear those words. He sent the most beautiful reminder… my dancer telling the story of these years, reminding me in the most beautiful way that He’s got this, He is right there and that maybe our hardest parts of life are mercies. Imagine your lovely, in a soft gold flowy gown, gracefully dancing across a stage to Laura Story “Blessings”…

“When friends betray us, when darkness seems to win, we know, the pain reminds this heart that this is not, this is not our home…” This is not our home. Reminding us that this place is temporary, this pain is temporary, the joy is temporary… to gracefully dance through it is a gift. I felt such joy watching her dance… what an honor to be her mom, to get to raise her and build her. She is one of my biggest blessings- and in all the rain and storms I am grateful, in all of the turmoil and hard moments parenting I am grateful… in moments watching her do what she loves and share her gift I am grateful, I am joyful. Joy is one I don’t feel so often, so when I do, I store it and love it and keep it and reflect on it and embrace it.

I really loved her dance program this year, The King’s Dancers, a Christian based dance program. I loved the music and costumes and the inclusive nature of the program. The recital opened up with “You Say” a beautiful and powerful song that has mainstreamed. They mixed 2 versions- the soft version with ballerinas, and the edgier version the hip hop dancers took the stage. It was an awesome way to start the show and set your brain to enjoy. There were dancers of many different abilities and needs who got to share their gifts with the audience. As I watched a lovely woman named Grace dance, I wondered if her parents knew God made her to dance when they named her. Grace has down syndrome and is a dancer, you could see it is in her soul to dance, and to share her gift. Watching her dance in a ballet piece and flow across the stage, hip hopping later to a fast song, and tapping with the biggest personality. I had the crying emotion that comes when you are smiling really big, I imagine it looks pretty funny to see that face… the one that is crying from the connection and emotion, and smiling because it is so beautiful and cute and happy. Emotions are funny like that…

I got to my seat and realized when I was watching the show, that in all of my planning all of my packing… I had water bottles, almonds and cheese sticks, extra lipstick… I forgot to bring tissues. I would sit through all of those practice classes and watch Amelia through the window and have a little tear, and Lucy would laugh at me and remind me that I cry soooo much. I should have been prepared for that, but instead I tried to discreetly wipe them and move along. I remember a time when I barely cried… I used to cry at weddings, at the moment when you just felt so happy and excited for the couple getting married… a little bit of tear would fall, but it was excited and happy tears, usually I was standing next to my now ex-husband. I don’t cry at weddings anymore… I am sure those emotions are all mixed up and messy- and I am usually thinking I hope they work really hard and know that that marriage gig is hard. Instead of crying I send little thoughts of hope that they just keep working.

I think crying is different for me now, it is a mix of emotions. I usually don’t just get super sad and cry, occasionally. I cry when I watch my girls do what they love and what God made them to do- and those tears are happy/sad tears. Those tears contain excitement and joy- laced with pain and missing. Every bit of growing they do is without her… my forever 5-year-old. God is good though… He sends little reminders and moments that remind me “What is your blessings come through raindrops, what is your healing comes through tears, what if a 1000 sleepless nights are what it takes to know your near… what is trials of this life are your mercies in disguise…”

 

Amelia- always dance. I am so proud of you and the person you are becoming. You are beautiful. You are kind. You are strong. Choose to dance gracefully on stage and in your life… it’s hard lovely but there is love in the hard. You are my love in the hard… you are my grace, my mercy… you are all I have never deserved. I hope you dance…

 

In my time…


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Sometimes… the missing is so big. Other times I wander through life far too busy to let the missing feel big… I guess we could label that as most of the time. I am so very guilty of not sitting in my pain, and I feel it right now. I am fighting the urge to call a friend and go out to laugh, to turn this part off. I know that a Friday night out listening to a band and eating onion rings would fix this part, it would band aid up the hurting. I could do just that, I know how, I do it far too often. That exact behavior has gotten me to this very spot. I would love to leave this spot, but not just for tonight, for a time. I have a pile to sit in, a shovel full of emotions to feel and a lake full of tears to cry.

Grief is like that… fine for a time, amazing for some moments and then boom… broken again. I believe it will always look like this; my forever looks different that the forever of a mom who gets to wake up here on Earth with all of her kids on Mother’s Day. The missing never leave, you just realize that the world keeps on spinning, others move forward and consequently I must move forward too… tiptoeing sometimes, hiding others… working, watching baseball games, parenting, driving kiddos and all those other things that never feel just right anymore. I remember way back when; when those tasks and many others felt natural to me. I love my life, but so often I feel like a shell of a mom missing a big chunk of me as I watch those games and see those plies and all the dog chasing, they do now-a-days. I miss feeling whole, but I imagine if I felt whole right now I would not be honoring Madeline’s space in me.

Why now?

I don’t know really why these days hit so hard. I feel lost in my faith, though I know that right now He still is my rock in these stormy seas. I feel lost in my life, like I don’t know what direction to head in next. I need to find a way back to being still and checking in with myself, all of which looks different than it used to. I am so tired, tired of getting through Mother’s Day and not feeling like it is a special day. I smile and nod and laugh, but really I am missing the breakfast in bed Madeline never got to bring me… and the cards and experiences I never got to have with her. The other, more full part of me, loves all the bits with my girls that are here as they write me the most special and honest reasons that they love me. Lucy loves so simply and candidly; Amelia always has a sas or a sparkle… a little bit of fairytale. I freakin’ love them…

I imagine who my Madeline would be… and I wish she got to be a difficult and stubborn teenager. I wish I got to see her faith grow, her smile at National Junior Honor Society Induction… she would be totaled annoyed and impressed when I told her I used to be the NHS Treasurer- she might even wonder who the hell would have voted me for that role. I wonder what parts of me she would pick on, what she would be proud of… would I still be a runner, would her favorite place still be the lake… would her cousins still be her best friends??? One can only wonder…

What is it about this time of year, or is it all parts of the year but this is the time I can just break down? I am sure it is a compilation of all of the piles together. Grief and missing are complicated. For tonight, I will fight the urge to head out and seek a distraction, I will sit in it. Right now I sit in the surprise sunlight that joined us this evening… eating Italian bread and letting my face get warm on one side. Stillness is a big part of the healing, over and over. I imagine that when I am 45 and 58 and 60 whatever I will still feel this intense heaviness and need to sit alone and feel all of this emotion, to process all that is missing… to recognize the lack of Madeline in my moments. I’ll never know why this is the life I have, why I have to miss and feel all of this… somedays I wish for different, but tonight I sit in this.

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.

Our ‘goodbye’ to a giant, is his ‘hello’ to his girls

Saturday morning, I woke up with all the plans of the day going on in my head. Maddie’s Mark had a BIG Best Day Ever and I had to organize the worker bees and figure logistics for cake pick up and beyond. It was one of those crazy days…

I woke up to news that George Bush had died, at 94 he went home to Jesus. His granddaughter shared a powerful, emotional and raw post about her Gampy, along with an image my mind will never forget. I have read and reread her words, and will most likely read 100 times more before I put them away for a time. The connection to George is that for me… beyond him being a pretty great human being, beyond him deserving my respect as 41st President… we both belong to the same ‘club’. We both lost our little girls to cancer.

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I remember learning that there was a Robin Bush, and reading her story. I felt a connection to the Giant that Jenna wrote about. It soothed my heart to know that He and Barbara still remembered her, still talk about her, still honor her. I always worry that someday we will forget, someday we won’t talk about her… fear that she will disappear. I love knowing that they brought Robin along, telling stories and using her words- “I love you more than tongue can tell”. I imagine that reunion moment was a gift God could not wait to witness.

I have an image in my head of what this will look like… what that entry to heaven will look like for me. I imagine Madeline as my 5-year-old waiting for me, impatiently. I don’t imagine clouds, but instead a sunset just the way we loved at the lake. I see her running to me, as I go to her. She will know me, she will be waiting for me… she will be right there with the longest super hug. I can’t see or hope further than that… every moment after doesn’t matter.

Somedays I want to just fast forward to that time, to that moment with her. I know it will be spectacular, my own little miracle in this mess. I think about fast forwarding, but then I am reminded of the rest of my life and purpose and people. Imagine if George and Barbara didn’t use their years here, in this mess, to make it neater, safer and different? I don’t have Political goals, I don’t plan to be President of anything except Maddie’s Mark, there lies my purpose, my job. I get to spend my time here parenting, and looking forward to meeting my grandkids, I really think they are the gift after raising kids through all these tough years. My job is to share Madeline’s words- Best Day Ever, and know that every time I say those words, I am brought back to the moment she altered the future with those words. I can see her hands next to her face with the most perfect smile, after she poked my arm, she said “Best Day Ever” in the most excited and raspy little girls voice. In that moment she brought my crazy brain back to simple and present… almost prepared for the time to come.

I imagine Robin’s short life sat in the back of The President’s brain and her story was a part of the decisions he made. I know Madeline’s short life is a part of my life decisions… she is helping me build the best kind of life.

Madeline’s life sent my life in a direction that I didn’t plan on, just as Madeline’s death has redirected my whole future. I now work with Childhood Cancer Advocacy, Childhood Palliative Care, Organ Donation, Non-Profits… I work in a Special Ed classroom that supports building social and emotional skills. I teach Faith Formation, I write, I speak… alongside raising Madeline’s sisters. All of these things are different than I planned, but they are a part of the different purpose that God is directing. I am sure George and Barbara’s whole life was forever altered by the experience of having a sick daughter and then her passing.

I keep rereading these words from The President’s letters, I love that he wrote so much. I think it is a special gift to the future to leave your words, especially handwritten. The feeling is so familiar to me…

“We need some starched crisp frocks to go with all our torn-kneed blue jeans and helmets. We need some soft blond hair to offset those crew cuts. We need a doll house to stand firm against our forts and rackets and thousand baseball cards… We need a little one who can kiss without leaving egg or jam or gum. We need a girl,” he wrote.

 

“We had one once. She’d fight and cry and play and make her way just like the rest but there was about her a certain softness. She was patient. Her hugs were just a little less wiggly,” he wrote

-George H W Bush

 

Thank you, President George HW Bush. I will always see that image of you and yours meeting in heaven. Your words and actions, honoring and telling others about your lovely- knowing that you still thought of her daily… she never disappeared, are a great comfort to me. Enjoy that soft blond hair… enjoy hearing “I love you more than tongue can tell”…

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Just for a moment…

Time moves and the world spins, it spins and spins. That is how the world works, how time works… the world spins and time moves on. I know this, I see this- but it still hits me.

It was a sunny, chilly and perfect Best Run Ever. I love this day- I get to chat and catch up with people I never get to see and I get to see MANY people run like cheetahs. Madeline loved to run. She would run in circles around the front yard, exclaiming “Mommy, I am as fast as a cheetah!!!”. I would always smile as I sat on a blanket and watched- and think ‘She is fast, but I hope she doesn’t get cocky about it.’ I remember her teacher telling me that Madeline would just run circles around the playground, not even play on the equipment, she would run with her friend. She would run ‘as fast as a cheetah’ on her playground, way back when.

I ran a marathon in October 2011. I worked that whole year to train and prepare to run 26.2 miles. Madeline would bring me my Gatorade after my long run and the rest of my girls would then run outside and climb all over my sore body as I tried to stretch. She was so proud of me. Honestly, I have no real regrets of the life that Madeline and my girls had, but I really wish I took her out of school and brought her to my marathon. All sorts of people told me not to let her miss school days- and now I know that educational and important experiences trump a day of learning to read or practice sight words. I wish she had been my real and true cheer leader, it would have made it perfect. Life is like that though…

Madeline loved to run. She was smooth and fast. Her runs would be accompanied by this infectious giggle, a little raspy and so very perfect. I miss her like crazy…

I love when people get together and celebrate and honor my daughter, it keeps me going. I had a hard time talking today, partly because I rushed up to the mic when my jeans were slipping down and partly because it takes a lot of emotion to live this… to miss her.

I didn’t mean to share about Madeline running on the playground in circles, in a way the 5k is a big circle to me. Every runner heads out there and finishes the circle- just like Madeline did around my tree and her playground. Part of this 5k is seeing MANY people, people who knew Madeline mixed with people who didn’t run together and build together…

Today was amazing. In that amazing is hard…

It is hard to see peers of Madeline’s… hard to see them grow, hard to see them run. There were only 2 of Madeline’s peers running today, and they ran like cheetahs. They followed that direction and brought her along on the run. It was invigorating and exciting to watch them cross the finish line- I felt so proud of them. That pride was laced with hard…

It is a special thing to see that while the world keeps spinning, and spinning and spinning… for a moment the world stopped again- for a moment it wasn’t spinning away from Madeline, but along with her. I always love my yearly hug from my girl’s preschool teacher- who knows my girls better than most, to get to see old coworkers who were knew Madeline, before we knew if she was a he or a she. I love getting to hug Mad’s Godmother, her old playdate friends, my old friends- one from high school even snuck down with her set of boys. It is special…

Today my world almost slows down… who am I kidding- it just moves on in it’s traditional Musto Chick fashion… working on Best Day Ever’s and a speech presentation for this week, getting my girls to the eye doctor and dance and Church School. This is the normal… the days when the world keeps spinning, but for one morning the world, most of it, slowed down to a pace I can tolerate and enjoy… for one morning it felt like the world was spinning along with Madeline.

 

Does your day matter?

At the end of the day did it really matter? Did the things you did in your day matter or make a difference? Did you make a big deal out of a little deal, did you let spilled coffee or a fight with your daughter ruin your day? Did you stub your toe, back your car into the garbage cans or maybe forget something important? Did you get angry at the slow car in front of you or yell at the cashier for making a mistake? Did you stress all day about what wasn’t going right? Did you rush through the important stuff, trying to get your family to the next thing on the schedule? Did you fill your night with dance, soccer, tryouts, clubs, homework, reading and of course an hour of driving to all of the above? Did you go, go, go until bedtime and forget to enjoy your family, forget to eat dinner together?

STOP.

JUST STOP.

Hear me out. We get one shot, one chance to do this. We get one chance to do all the things we get to do in the time we have. Some of us will be here a long time, some of us will be kicking around on this Earth for over 100 years. Many people live to be 60 and 70 and 80 and beyond… they can reflect back on the speed of those years- missed adventures, funny memories and big bold moments. It goes fast. Sometimes it goes even faster…

Madeline only had around 8,700 hours to spend here, though we didn’t know. She lived them well, I can look back and see we did it pretty well. She should still be here, but we don’t get to pick the piles of life that we are dealt. Madeline had cancer- not just cancer but a fatal, inoperable brainstem tumor that always steals the last breath and heartbeat of those with it. She had a short life… a painfully short life.

We don’t get to pick… the hard stuff or the easy stuff. We don’t get to pick. I work with families that are going through the hardest things, not just cancer diagnosis, not just treatments… but add on Palliative Care. I work with families, often, who are preparing to say goodbye to their child. They need to hear that they need to trust their gut, that others opinions don’t matter and to try not to focus on those people who are living life and posting or saying things like FML. I am constantly using these life experiences and lessons to frame my life outside of support of others.

For every bit of missing, Madeline has taught me how to live better. I do my day with intention to do ‘what matters’. Sometimes ‘what matters’ is brushing something off your shoulder or reminding yourself it is a little deal. ‘What matters’ might be unpopular- but I try hard to choose it anyway. Oftentimes ‘what matters’ is inconvenient- we have dance, baseball, tryouts, meetings and beyond so we put off ‘what matters’… we try not to do that in our house. We work in the ‘what matters’… and we do ‘what matters’ together.

Cancer altered my perspective on life and living, on ‘what matters’ and time. I wish that lesson came from something else, imagine if I could still snuggle Madeline and watch her grow AND see life the way I now know it. I have never been a person who sees life for all the crap in it, and you better believe I.do.not.use.FML in my vocabulary… I see life for what it is. I see the amazing and hard, joy and pain, love and loss…

So… at the end of the day it is your responsibility to make sure you made the most of it, to know your time mattered. Remind yourself of what is a big deal and what is a little deal- also remember almost everything is a little deal. Remember that we are all doing life- with the hard and the joy, pain and the loss… right next to each other, that waitress or clerk or librarian or slow driver is going through life too. As far as overfilling your time- STOP. I know it looks like it matters, but it doesn’t. Don’t go to a random kid’s birthday party and skip seeing your family, don’t put all the work into 50 activities that keep you busy, don’t fill your life with a schedule. Schedule time for life… I promise you it isn’t worth it- I can only imagine what it would feel like if I had filled Madeline 8,700 hours with the filler crap and the activities that we push them into. JUST STOP… trust me.

We don’t get to pick the hard stuff or the amazing… but you need to be ready to enjoy the amazing and endure the hard. I didn’t pick Cancer and loss…

Make your hours matter.

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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…