One never starts this adventure of being a mom thinking that their story will change like mine has. To think that my daughter Madeline would die before she lost her first tooth, read a chapter book or graduated from Kindergarten… never.
My daughter Madeline, Maddie to many, was an amazing, kind and vibrant 5 ½ year old. On February 3, 2012 she was diagnosed with DIPG, a rare inoperable brainstem tumor. She died on February 8, 2012, just 5 days after diagnosis. Her story does not focus on that date… her story is so much bigger- her death was only one day in just about 2000 days. Her story is full of living, enjoying, playing, laughing, teaching and running. Everyone who knew her knows this, and those introduced to her memory after have learned this. The story is what you fill it with, the life you live, the memories you make and the lives your touch and bring along. Maddie’s living adventure is over, but her journey is far from over… her life and memory have touched, changed and helped so many people. She is a blessing- past, present and future.
One year… one year without her. I can’t believe we are still alive. Honestly I never thought life could go on without her, but alas we are here, at the one year mark. I am pretty sure I have 40+ to go…
In this year I have learned so much about everything- me, my husband, my daughters, my family, my friends, people in general and living. So many days I could just stay in bed and let the hard take over, but then I remember there is an Amelia and a Lucy to dress and feed and get ready (and would write all over my house in sharpie if I stayed in bed)… so I get up. If I get up I might as well have some coffee and yogurt, go run… if I am out of the house I might as well grab groceries, stop at the playground and visit friends… I have to meet the bus (or the bus driver will take her back to the garage and she’ll think I forgot her)… and if I am here for the bus I might as well clean the house, do homework with Amelia and make dinner right? So I guess there is my motivation… I might as well live right? In the midst of all of this getting up and going about a ‘normal’ day… I often find myself laughing, smiling, crying, singing, thinking, running, moving, crying and sometimes actually enjoying.
There are so many moments when I am flooded with missing her… where the shock that she’s really gone hits me. Those ‘shock’ moments happen slightly less than before but are still a pretty regular part of my normal. I love those terrible and heavy moments… they make me know that life isn’t too normal. I know that sounds crazy, but it scares me to think of a time when I don’t get hit with how much I miss her… then she will seem farther away. Madeline was my introduction to the hardest job ever and my favorite job… she is the person who made me a mom. Without her I can’t believe I can still be a mom… but I also know she helps me keep being the mom she loved… even though I have lots to work on. Sometimes when my world is crazy and busy and full- these moments of missing bring me right back to her. There is joy in sad, happy in tears and love in the hard… for I had a Madeline to love and she was amazing… no one I know has or had a Madeline. I am thankful for every moment of her 5 ½ years, she was made for Matt and I, she was made to be Amelia’s big sister and Lucy’s little momma… and as hard as this year has been I know that I am the luckiest mom to have had this perfect set of Musto Chicks.
So one year and parts are harder, parts are easier… everything is changed. Madeline made her mark on my heart and my soul and my future. Madeline made her imprint on her father’s heart and brain and soul… and her sisters whole being and futures… and that is just the start. A huge blessing in all of this has been the start of our family’s foundation to honor Madeline… Maddie’s Mark Foundation. This is our way of helping other families enjoy ‘best days ever’ and fill their stories up with great memories and simple joy… to help families with sick kids enjoy their time like the world did for us. This is our new ‘normal’, our mission and our new ‘forever’. This is the way we can share Maddie’s story, her just over 2000 days of living, enjoying and being a light. This foundation has changed my future somuch. I am now a ‘grown up’ and I feel like Maddie guided me to this foundation. I know she is glad we remember her and share her story and bring her along for our little adventures and along this whole life journey.
I hope and pray that year two will bring more memories, more moments fill of Maddie and lots more sharing of her story. I am so glad she filled my story with so much joy and life… I am glad she helps me live. I hope year two she helps me continue to move, live, run, smile, cry, plan, create, share and love…
Erin is wife to Matthew, mom to three lovely ladies- one of which just happens to be an angel, a real true angel. Her daughter, Madeline, became an angel in February 2012 just 5 days after being diagnosed with DIPG, a rare inoperable brainstem tumor. Most days she chases her lovely ladies, Amelia and Lucy, around as they grow, play and learn. She loves running, being with family and friends and writing.
Her family has worked hard to create Maddie’s Mark Foundation to honor her lovely Maddie and to help other families faced with challenging illnesses. In all of this Erin became the President of Maddie’s Mark and makes it her mission to share Maddie and her spirit forever. The foundation has helped her family start to heal, meet families they needed to meet in this journey and remind the world to enjoy a life of ‘best days ever’.
Erin loves to write. She finds much therapy in writing her thoughts and sharing what she has learned. She used to pride herself in knowing much about life and mothering… but feels that life and living and mothering have changed- that she has a bigger grasp on understanding life and living and parenting on her new journey accompanied with grief.