“Living” Without: Loss of a Child


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.

Read Erin’s other articles:
Where Did My Life Go?  Living After Loss

How to Help When a Family Has a Loss
Pediatric Cancer Awareness
Hope in the Holidays




  1. 1

    Erin, I have followed your story since you lost Maddie. As someone who lives in your area, please know you are a real treasure. Someone we can admire and be proud to say is our neighbor. I know of one of the boys you helped through your organization (Myles) and I know you are doing really good, hard work. Maddie is proud of you. We all are!

  2. 2

    This story is my reality. My son passed away 11 days after Maddie. He was 6 years old and died tragically in a car accident. I read this story and it immediately brought me to tears because everything that you wrote is what I am dealing with. I remember when I first heard about Maddie through a prayer chain. I prayed for Maddie and also thanked god that I had 3 healthy children. Then when she passed I remember thinking that I could never imagine the loss of a child. No parent should ever have to deal with such a loss. I commend your bravery and inspirational story. I too try to keep my sons memory alive. He is also my angel. What you are doing is amazing. Thank you for sharing.

  3. 3

    Speaking as someone who has also lost a beloved daughter (3 years now) I know all too well your pain and sorrow, and am constantly amazed that somehow my life goes on. My child is with me with every breath I take, with every beat of my heart. I look calm and collected on the outside, but inside I am screaming at the top of my lungs. The lost potential, the grandchildren that won’t be born now, the beautiful summer days that she is missing, I mourn for all of it. This is one wound that time does not heal; those who have never gone through it think that it must get easier with the passing of the years, but it doesn’t. I still have those “stunned” moments, I still weep for my daughter daily. Yes, I am living my life, even finding some joy and happiness on occasion, but my daughter’s death is a part of me now, like my eye color. On the days where I have an especially difficult time bearing it, I take some comfort in knowing that eventually this life of mine will some day end and I will once again be with her, forever.

  4. 4
    jamie braun says:

    so sorry for your loss. I have a friend that is dealing with what you are. 6 months ago, she lost her 6 month old son to sids

  5. 5

    Your words are so true and pure. I loved reading this and can understand all that you are feeling. I still feel the shock of missing Nick 4 1/2 years later and I can’t believe sometimes that he’s really gone. The milestones that I know I’m missing of his just really hurt. He would have been graduating Shen this year. But the beautiful memories that I have of him, how he has changed so many people lives, how he has changed my perspective as a writer and made me a better mom, wife, sister, friend, aunt, and daughter is incredible.

    I always say that our children chose us because they knew we were the best moms to get them through their journey and where they needed to be in this life. Now we live with incredible missions–helping other children heal and loving our children no matter where they are.

    I look forward to more writing. You have a beautiful voice!

  6. 6
    Lisa Sabine says:

    Simply Beautiful….as I read your words I thought I was reading my own….I am sharing my girls smiles.

  7. 7

    I lost my daughter on her 15th birthday. I just went through the 6th year of being without my baby. I am sending warm wish your way. My husband and I always say the pain is always the same but some how we learn to live with it. We have great memories that make us laugh and smile but it will always be bittersweet that there will be no more. I hope your road of grief is as smooth as it can be and that memories will carry you through.


  1. […] more of Erin’s story here: Living Without: Loss of a Child, How to Help When a Family Has a […]

  2. […] more of Erin’s story here: Living Without: Loss of a Child, How to Help When a Family Has a Loss, and September – Pediatric Cancer Awareness […]

  3. […] more of Erin’s story here: Living Without: Loss of a Child, How to Help When a Family Has a Loss, and September – Pediatric Cancer Awareness […]

  4. […] more of Erin’s story here: Living Without: Loss of a Child Where Did My Life Go? Living After a Loss How to Help When a Family Has a Loss September – […]

Speak Your Mind