Where Did My Life Go? Living After a Loss



Where did my life go?  This is a common wonder I have.  Where did the ‘marry my college sweetheart, get a house, get a dog and have lovely set of three girls’ go?  It obviously went somewhere.  Maybe it was always not the way it was anyway… or maybe it is broken right now.  So many parts of that line-up are just so different, now that Madeline is gone.

What changes after this loss?  I think an easier question is what stays the same… and honestly, that would be nothing.  I guess your shoe size stays the same- so scratch that previous answer, I got ahead of myself.  Nothing stays the same… nothing is at it was.  My life is so different now… it is on another level all together.

My parenting changed… I realized that in all of this those lovely ladies are just as changed as me, in different ways.  They lost a role model, a safe… a piece of their heart and world.  They have to grieve and take over certain roles.

Amelia is now ‘THE big sister’… she had to relinquish the middle sister roles… all of the sudden she was the oldest in a way.  The oldest sister has sooooo much responsibility.  That is a hard role to fill and Madeline left big shoes.

Lucy is a real and simple and comical person in all of this.  She is the most knowledgeable and innocent in all of this.  She knows where Madeline is and painlessly pulls Madeline into every single day.

I am a losing parent most days.  I am too tired to fully follow through and make a point… I am thankful often that God gave me ‘pretty-much-well-behaved’ girls and they independently are generally kind and good… because I am too darn tired to do it all.

My marriage has changed…  In fact I often wonder… where the heck is my marriage?  My solid and real marriage… until I remember that I didn’t help build a solid and real marriage.  I was so tired and busy and burnt out from all of the parenting and life of three very little ladies that I forgot to work on the solid and real and important parts of my marriage.  That leaves today… a day when I crave the solid and safe part of my husband… and I am lost.  He is lost.  We are working harder than most can imagine to find our marriage, to be the best parents to our 2 non-angels and to find ourselves in this mess.  We should have been maritally prepared.  We are learning and trying and living… but it is hard.

My ‘me’ has changed… I am so not the person I was… I can’t even remember her.  I am less caring, more even-natured, and overall just less emotional.  I have lost the ability to feel most feelings… which is strange and weird to me- but makes sense.  I mean who could get through the layers of feelings that I have?  The layers of loss?… So my mind numbs those feelings.  I sometimes step out of the numb, but many things have brought me back to the numb place.  I hate it numb… it means no real and deep feelings of pain… but also of joy, happy, excited and okay.  What is life without happy, excited, joyful and okay????  There is no time for the ‘me’ of the past.  She did so many crafts and projects and finished… this Erin is so much less organized and crafty… I overthink so much with the ‘real’ world and meanings inside of it.  I mean seriously Erin who cares if you make homemade birthday favors or take hours to create a perfect and personalized gift??? That is a waste… but is it really?  I feel so happy to see Madeline’s friends still wear and cherish the tiny hand painted ‘Madeline’ Peg person I spent hours making… that is kind of priceless to me… but the time is so expensive now.  I don’t doubt that life will bring me time… Life and God have brought me, in a way, everything I have ever needed.  Was it what I wanted or asked for? … Rarely.

My perspective has changed.  I see the world in a different light.  I see people as being temporary.  I see nothing as permanent.  Think about it… what is permanent.  What lasts forever?  Granted, I am glad that I am not here forever, forever is a really long time.  I am all good when the time comes that I get to rest and go be with Madeline, all good.  My overall view of life and living has changed… even this numb shell of me.  My shell knows that life is great, living is fun and enjoying is a need.  That shell takes my girls to the beach, creates adventures and inserts diversions when the need is there… but the shell is numb.  The shell of me is (who I like to think is skinny and lovely) taking care of living and enjoying- even if ‘real Erin’ can’t.  I miss the days that I knew I would have 3 special and different daughters go to college and grow up… 3 wonderful bits of Matthew and I take on the world in their own way… I wish I could think about that now.  Instead I live in a day to day to day… and moment to moment to moment life.  Instead I know my loss when I think about it… and I have 2 amazing, smart, silly and individual ladies to do the best that this shell of Erin can do right now.  College is a LONG time away.  So my perspective has resorted to a day to day to day… and moment to moment… it is a perspective knowing that children die, people let you down and life is hard… God doesn’t let us pick the outcome and will guide you along the way… it is freakin’ hard.

I miss ‘me’, Madeline, Matthew, Amelia and Lucy, life… bits of my perspective… I miss so much.  I know that God will make it more livable and survivable… and will really know that when I can look back, in retrospect.  I know that I am ok.  I am alive.  I love my lovelies.  I am tired.  I love Matthew Musto.  I love ‘me’.  I freakin’ miss Madeline and love her so much… I miss her skin and heart and hair like no one can know… I miss naïve Erin.  I miss life sans ‘shell of Erin’… but alas this is where life has gone… where it now goes- only God knows.

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 more of Erin’s story:
Living Without: Loss of a Child
How to Help When a Family Has a Loss

September – Pediatric Cancer Awareness Month
Hope in the Holidays



  1. 1
    Kacey Robinson says:

    my mom lost a baby. He would be….25 this December? I can’t even remember anymore, which I am ashamed of sometimes.

    I saw my own 7 year old son through 15 surgeries, between 10 months old and 4 years old. At times I tried to imagine losing him, as if to prepare myself for the worst. I didn’t. He’s here, and fine and alive and perfect. I’m so grateful. SO grateful.

    Every time I read what you write, I get such an unbelievable pain in my chest and tears in my eyes and have to choke it down. It’s hard to read what you write sometimes. But I do, as often as I can, and i’m glad for the pain because I know it is only a tiny itty bitty glimpse into your void – that one that is there since your baby passed. I kind of wish I could take more of your pain, if it meant that you would rest from the grief for a while.

    I I admire you, and am forever sorry for your loss.

  2. 2
    Carolyn Colley says:

    I didn’t lose a child, but I lost my first husband to leukemia at the age of 24, I had a 2 year old and a 4 year old, not a day goes by that it still affects my life and it’s been 28 1/2 years. I can’t even imagine losing a child, we almost lost my grandson when he was born and that tore my heart out. He had a shunt put in his heart at 2 weeks old and at 9 months had to have open heart surgery. Thanks for sharing your story.

  3. 3
    Michelle Hz says:

    So sad even to consider. My prayers are with you.


  1. […] 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 […]

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