The first time Madeline Musto’s face appeared across my computer screen, I was captivated. Thousands were. Not only is she angelic but as a mother, your heart stops when you see the words “inoperable brain stem tumor” written beneath a face that makes you question faith, security and what naturally seems unjust.
Truth be told, there was someone else who I immediately felt a gravitational pull towards. It was the woman and mother who I projected all of my fears onto. Who was once a stranger managed to make her way into the raw, fearful and vulnerable crevices of my heart that most of us mothers hope remain untouched and protected.
So there I was like so many. Divinely orchestrated to watch and listen to the legacy Maddie intended to leave for thousands in the most extraordinary ways. Yet I was astounded by this woman whose tenacious drive turned grief into purpose, loss into abundant love with an unparalleled ability to create a legacy in her daughter’s honor. It caught like wild fire because the hope, purpose and connectivity electrified hearts all over the world. Erin turned what most would experience as a paralyzing and debilitating tragedy into the widespread of hope and possibility for people who had no connection before Maddie’s spirit demanded there be one.
I wrote Erin one day and told her about my Resurrected Together initiative. We exchanged stories about our blogs and I well, humbly informed (or more truthfully, warned) her that I was deeply humbled by our exchanges. To me, Erin is what I undoubtedly know all of us can only hope to exude so naturally. She is an exemplary warrior who triumphs despite facing adversity and soldiers on for the sake of her daughter.
I firmly believe a mother’s love for her children is unmatched and folks, Erin Musto is the very example of that. Erin was recently honored by Assemblyman Angelo Santabarbara as one of Schenectady’s Women of Distinction because of her extraordinary foundation.
To say I am both deeply proud and humbled to honor her as our June Honoree under the Resurrected Together initiative is a serious under-statement. Please take a moment to hear about Erin’s story, the Maddie’s Mark Foundation and join the rest of us in what has become a remarkable story that continues to inspire, impact and influence people from all over the world.
Please join me in honoring Erin as she resurrects her truth and let her know you’re PROUD to stand resurrected in truth together.
In Love & Truth,
“The story we live is most definitely never the one we imagined for ourselves. Life happens… in the way that it always does, and always has. I know if we, as humans, could even understand the ‘grand scheme’ we would be overwhelmed and confused. It isn’t our job to understand it all, only to live and move and create and build and break and grow- using the gifts and lessons we all have. We will experience great loss, feel and know grand blessings and carry on…
I look back at all the things I meant to be, the things I imagined were in this life for me. I wrote in my yearbook, way back when, that I wanted to be an Architect in NYC. I know at that time I didn’t really want kids for a long time. I wanted a fancy apartment, a night life and all that sparkle. In college I wanted to be a doctor, like in Grey’s Anatomy. I wanted to wear scrubs and sleep in the sleep room, wander around drinking coffee and doing surgery. I wanted to fix people and immerse myself in the ‘hospital smell’ all.day.long. After college, I moved to Albany and got married and bought a house… I planned to go to school (maybe to be a Doctor) … and then I was blessed with a little Madeline.
I didn’t envision being a mom so quickly and so young, but it was the reality. I wasn’t ready for reality. I gradually became the mom that I wanted to be, that I am proud of being. It’s like the journey was made for me, even though I couldn’t see it. I see my life now and I am grateful for all of the detours, the side roads and how it turned out so much better than I imagined. God has woven my life into the most beautiful and colorful and broken yet mended fabric. I am grateful for Him and His vision and creation of THE ‘Grande Scheme’.
My girls changed me. My Madeline, Amelia and Lucy built me to be more patient, more kind, more creative, more tolerant, and more loving. My world focused on taking care of and molding the best people I could, and I do believe they were and are pretty amazing people. I didn’t understand the plan, and I still don’t. I know that for this piece of my life I am a mom, not a doctor, not an architect… thank goodness. I quite love the adventures of ‘momming’… parks, meltdowns, snacks, crafts, school and life. I am so grateful I didn’t get the journey, the path, of Med School back then…
My life is built on the premise that I know not what is coming, I know not how to deal, and I know not what this beautiful and broken life should look like.
Madeline changed me. In every bit of her growing, becoming, and dying she changed me. She changed me for the good. Madeline was the easiest child, she was well mannered, happy. She was a great eater, she laughed all.of.the.time. She napped like clockwork and loved to go to bed on time. She made me a mom and helped mold me into a good mom. In every way, she helped create and build me- even today, even though she is in heaven.
My daughter Madeline was born on June 25, 2006, after a crazy long labor and a delivery that took forever and a moment. She rocked my world. I was lonely and confused and in love and broken and lost and found and happy and sad all in only moments. I understand it all better now, thank goodness. She was my sidekick. We learned this parenting gig together and walked the wheels off a stroller before she was 1. She never said no to an adventure, always showed her one dimpled smile and connected people all.of.the.time. She loved to see me grow, and I loved to make her proud. Her milestones are some of my best memories. All of the sudden she was ready for kindergarten…
I grew with my daughter- in all of the best and most important ways.
Madeline entered kindergarten in September 2011, my little 5 year old got to ride the bus and eat lunch with her friends. She loved it. I loved sending her, but most of all I loved standing outside waiting for her bus. I loved seeing her run off and come snuggle with me. It was an important part of my day.
Madeline started to feel uneasy going to school in November. She was homesick and it broke my heart. In January she started to have dizzy spells and in February she started to show scary signs. Madeline was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a terminal inoperable brainstem tumor on February 3, 2012. She enjoyed her last days, but passed on February 8th, 2012. Madeline had 5 days of being a child with DIPG or just cancer… to gone.
Life keeps Happening…
I could not find purpose in Madeline’s sickness or death. I just kept missing her. I set my brain to honor her, to help build something that could honor her. Maddie’s Mark is just that. It is our way to bring her and her beautiful kindness for the next journey. Madeline is my inspiration for supporting and caring for families going through the hardest. She inspired others to take life by the horns and love it for all the broken and polka dots that are laced into it. Madeline makes her mark…
I am who I am because of all the moments and people who built me this way. I laid in a hospital bed with my family one morning, while most of you slept, I said goodbye to my love, my daughter. I saw her stop breathing, I saw her eyes close… I miss her but she built me.
Maddie’s Mark is the most beautiful way to share all that we have learned, the ways to care for others in this difficult journey of having a child sick. It is a piece of Madeline that I get to talk about and bring with me everywhere I go. I liken it to the only way I can still care for my Madeline, I parent my two Musto chicks and help them navigate this Earth. I ‘parent’ Madeline by sharing her journey and supporting others.
I love what Madeline has built in me, and inspired me to build. I am different now… I see the world differently. I see the simple, the joy and I welcome the pain. I know that to feel the joy and see the beauty we must feel and live the whole scope- the grief and the pain and hurt and the breaking… if only to grow and build better.
I finally love myself. I finally let things go. I finally see what is important- what is a big deal and what is a little deal. I finally call myself a writer, yes a writer.
I am a writer. I always have been, but I doubted myself. I was always scared to open up, to be vulnerable. I was scared to fail or to sound stupid. I was scared that I wasn’t good enough, or my voice didn’t need to be heard. I wrote some funny blog posts, in a notebook. I always thought I would write a parenting blog that highlighted the funny right along with the lessons. I remember distinctly writing a blog idea in my notebook called ‘Potty Training vs. Marathon Training’. I never started my blog back then… I fully believe that I wasn’t supposed to. I believe that God wanted me to write about parenting mixed with grief and loss… about living with missing. I finally started a blog, Climbing Up the Polka Dot Tree, about our life climbing up the colorful and beautiful tree of life… that is full of polka dots. I am a writer and I thank Madeline and God for reminding me.
I know that the life I imagined would look so different from the life that I have. I had all of these ideas, but never could I ever have imagined my Madeline, my Amelia and my Lucy. I could have never imagined what it would be like to parent them, to build them. I saw my life in one way- mothering all 3 of my girls, married to their dad… but the reality was so different. I miss my love, my lovely Madeline, but I can’t change it. I can only move, walk , breathe, cry, yell, work, build, break and keep on living… that is my job to build me with her in me.
The foundation provides a series of humanitarian initiatives such as
“Best Days Ever,”
“Maddie’s Mark Scholarship Program” and
“Maddie’s Elephants,” that are impressively helping to keep Maddie’s memory alive in 3- states, over 100 cities/towns and at least 4 countries!
You can also follow Erin Musto’s literary journey on her blog:
Climbing Up the Polka Dot Tree at: http://www.climbingupthepolkadotree.wordpress.com