ERIN MUSTO

BY MAYA MCNULTY

We’ve all been told at some point in our lives that the best days are in front of us, though that couldn’t be further from the truth for one local mom. Erin Musto, 40, lives in the Albany, NY area and works full time as a Family Services Coordinator at the Center for Donation and Transplant. She’s also the President of Maddie’s Mark Foundation, a nonprofit that is known for creating “Best Days Ever” experiences for children diagnosed with serious illness and their families. Maddie’s Mark mission is to provide opportunities, create environments and enable children and families to live a life full of Best Days Ever.

Tell us about your childhood and where you grew up?

From a very young age I always felt like a lucky lady to grow up in a large Catholic family that valued community and faith in Northern, NY. I am the middle child of five children, and find great joy in being part of a big family. I fondly reminisce about riding my bike around our little village and making tree forts with my siblings and neighborhood friends. My childhood was filled with “creative adventures”. I loved school and formed many long standing friendships along the way. Though I was not a popular girl in school and lacked confidence, I loved learning and absorbed every ounce of knowledge throughout. I had several teachers that really fostered my love of learning and helped build more confidence. I am forever grateful for those mentors.

Tell us about your life before your traumatic experience or life changing event?

After high school, I attended our local community college where I met my husband Matthew. He was my tutor. He was confident, smart and so intriguing. We dated through college, with a plan to move and start our new life together. We moved from our hometown to Albany, NY. My life was perfect, like a dream come true. Life started to move fast. We bought our first home, got married, bought a puppy and soon our first baby girl had that same love of learning that I had. She couldn’t wait to meet her teacher, read books on her own and to eat her lunch in the cafeteria. She was full of hope and excitement. I loved that innocence about her. I could not wait for her to get off the bus everyday- she would run to me, and her sisters. That was my favorite time of day, when the bus came.

Madeline was born. I’m from a big family so I wanted a big family too. Quickly came Amelia and Lucy. We were all so happy and in love with our family of 5. I often referred to the girls as the “pod of Musto Chicks”. I’m not going to sugar coat those early days of having three babies under three years old. The piles of baby laundry was nothing compared to the exhaustion felt from the terrible twos tantrums and keeping the house tidy and afloat.

I remember the day that Madeline, my oldest, started kindergarten. She

My world came crashing down when Madeline died at age 5. Madeline was diagnosed on February 3rd and went home to Jesus on February 8th. She was diagnosed with DIPG, a rare and inoperable Brain Stem tumor. My loving daughter was given a chance at 9 months to live and passed away in 5 days. Before my world fell apart, I was Erin, the loving wife, proud mom of 3 little girls. My “pod of Musto Chicks”. After, I became many things - including mom to an angel, while still parenting 2 little girls. Our marriage dissolved after Matthew was unhappy and unfaithful. I became lost in my own grief. It took a number of years to rebuild myself. I see my ‘self’ now; I see my strengths and not my brokenness, I see how my lovely angel has impacted me, our family and the world. I am grateful for the fortitude within me to parent my now 2 teenage daughters. I love being their mom, laughing with each other and supporting my girls through life challenges as they get older. It hasn’t been easy. When Madeline died her sisters and I wanted to ensure that the world did not forget my lovely.

I pushed forward with a mission to create Maddie’s Mark and “Best Days Ever” for others.

What did you learn?

I feel that this past decade or so really was a lot of mountains, a lot of swamp. As if I was always trudging through something hard or climbing a mountain to get to the next place. It has been a lot, and many times it wore me out. I feel like through those difficult times, those heavy times, and those very dark times I learned to really value the light and bright times, to try to absorb the sunshine and laughter for the dark times. I believe that made trekking through possible. I learned to love my ‘self’, and to take better care of Her. All of Her. I worked hard to learn and build boundaries, and that became a priority. I see the value in healthy boundaries as I have grown as a woman and a mom. I dove into my faults, and I worked to recognize why I had them. I gave myself grace and time to heal..

I guess I learned about the gift of grace. I learned about grace and the power of giving grace. I grew up in a Catholic home, growing in faith through my life. I always felt close to God, and saw the value of prayer and mass. I have loved that growing up. I learned about and explored others’ faith, and what they have learned and brought with them. I remember a long time ago having a conversation with a dear friend while our children played, and she was telling me about 2 important words in how she understands God and faith. Over the years I have called her numerous times and requested she retell me the importance of those words again- those words are Mercy and Grace. She shared with me her understanding of Mercy: as how God shows Himself to each of us, and Grace: as a gift that you do not deserve. I know those are very simple ways of understanding very BIG concepts, but It has always made sense to me. I have since read Anne Lamott ‘Travelling Mercies’ about 100 times, and loved the candid ways she shares how she found faith, and how God showed her little Mercies through life. Grace is a gift we do not deserve. I have learned that gifting grace is, for me, a practice that helps me as I am building my ‘Self’ as a better person, mom, friend, daughter, sister, employee, etc.

What does it mean to be a resilient woman?

I had to find myself, and build my ‘Self’. I retrained my mind and body for months to become fit and strong. I challenged myself and proudly ran my first marathon when I was 29 years old. I never felt more in control of my life. After a full right hip replacement, I have gotten the opportunity to be active again and full of energy to care for my ‘Self’. I’d anoint my 2 girls with positivity, as if I was rubbing all the confidence I wish I had earlier in my childhood onto them. I see myself as a resilient woman. A WOMAN who keeps on trekking through life’s challenges. A woman who continues to grow and build from within. A woman who forgives others and herself for all the twisted lessons endured and who had to learn to love her ‘Self’. A woman who is able to experience very challenging events in her life and keep moving forward, even if it feels like a snail’s pace through the most painful and darkest times. To be able to endure and evolve, to continue to honor the pain, experience the joy and light… and for me to look back at all the scaffolding and scars, and love the person who has gotten Her to this very moment.

Maya McNulty Walking Warrior Columnist

Maya McNulty is a successful business woman, author and patient - led researcher. Her tenacity for advocacy, travel and outdoor adventure allows her to speak on global stages and experience different cultures other than her own. A positive mindset and attitude is the cornerstone to Maya’s active lifestyle. She has been featured on ABC, NBC, CBS, WebMD, Medscape, Healthline and many more.

Twitter: https://twitter.com/mayamcnulty

Linked In: https://www.linkedin.com/ in/mayamcnulty/

Websites: www.upthebiz.com www. covidwellnessclinic.com www. walkingwarrior.org

PHOTOS BY MAKENNA RIVAZFAR