Hand to Hold's Official Blog: Written by Parents for Parents

How life changes with Infant Loss….

Life does change after losing your child, forever.  The world you knew crashes, crumbles and is never put back together.  Life has changed, different and will never be the same.  It is a new different, not the one you wanted but the one you have to live with the choice to live it.

I never would have thought this would happen to me, but who would?  Losing Caitlyn would never have been something I would have wanted to know was going to happen.  When we said our wedding vows, never did we think of the power of those words would be at core of rock bottom.  It was hard to look at our wedding photographs for years as we seemed so happy and unknowing of what was ahead.

What I do know is that there is never a day that passes that I wish it had been different.  That Caitlyn should be 6 years old enjoying her summer and being a wonderful big sister and cousin.  That she would be going to “Back to School” shopping with me this fall.

My heart, soul, mind, my entire being misses Caitlyn and there is not a moment that passes that I don’t feel her next to me.  She gives me strength, that I know.  I couldn’t be here today if she did not give me that.  She is my pillar when I am weak, and my angel whenever I need her.  When I look at her picture it is so hard to believe she was taken from us, just left us with a dark space in our soul.

Life is forever changed, not for the better, different.  You can survive this, by choice….at first I gained strength through others, I lived for them…not for me.  How could I face the world when it felt that it crashed and left us with our guts ripped out?  No strength, no hope, no bright dreams…just a world we wanted to shut-off.  Never opened the cards we got, never answered the phone, never opened the blinds, never wanted to go out, never wanted to share any events…..just live in darkness, sobbing in my sleep….I had to live for others as I think I would still be in bed now sobbing.  Life moves on, and somehow you learn to live with the loss, you have to, somehow.  Finding your strength is the key, and it has to be your way.

For me, therapy did not work as I felt it took me to my knees and I could never get up.  Instead I created a website, I believed to be Caitlyn’s Wish somehow.  For six years now I have worked with thousands of parents, supporting them and having them share their story along with ours.  The website is my therapy, ongoing.  The sadness that is heavy, and feels like a brick on your chest is constant in the beginning then in time it eases, and returns in waves.  That is why my website is constant therapy, it is needed for my day-to-day survival.

Life will never be the same, and the saying “things happen for a reason” I no longer believe.  Today I have a new perceptive on life, and I do not stress over small things and live my life the best I can.  I bless the stars for having Caitlyn, she is always with me and I believe she surrounds herself with her younger sister and brother everyday.

Elaine Jones About Elaine Jones

Elaine Jones (Canada) gave birth to a beautiful daughter, Caitlyn, on April 5, 2006. She was born at 28 weeks due to severe preeclampsia coupled with HELLP Syndrome. She contracted NEC and on the morning of April 16, Easter Sunday, Elaine held Caitlyn in her arms as she passed from this life to the next. Life changed forever. A year later, Elaine created Babies with NEC, a website to help parents, like her, share their story and network together. She personally contacts every parent and finds therapy in helping them. Elaine is the proud mom of two other children, Zoe and Phoenix. You can also contact her on Facebook.


  1. I am so sorry for your loss, Elaine. I completely agree with you that after my loss, the “everything happens for a reason” expression lost all meaning. More than that, it made me furious whenever someone brought it up. Time passes and there is some healing, but their memory is never gone, their brief life always intertwined with ours.

    • Elaine Jones says:

      Melissa, I find I correct people now when they say “things happen for a reason” by saying “some things do, but I do not believe everything does”. People seem to agree. Do you do something similar now?

  2. Elaine,
    What an amazing blog post. Kasey Matthews shared your post with me and it totally resonated, every single word of it. Therapy did nothing for me, I would leave there feeling so drained, so empty, so lost that I never went back. I always say that I started my blog selfishly, for me-but it’s okay-it’s what I needed and it was my therapy to survive each day without our daughter, my therapy to figure out who I am without her. I like what I learned and I am so blessed for the amazing people that have held me up in my darkest hours. ♥

    • Elaine Jones says:

      April, your blog is your therapy. We all have to find our therapy to live…a different way of living. Writing makes you feel close, just as us talking this way helps. Its a sad way to live, but it is our lives. As hard as it can be, I would do it all over again to hold Caitlyn again….kiss her again….

  3. My husband and I just delivered our 25 1/2 week old angel on 12/8/12. I am trying to find a way to heal and work through this pain that is unexplainable. My heart aches and I feel so empty. Reading your blog (and other blogs) brings me some comfort knowing that there ARE others who unfortunately know my pain. I will continue to pray for all the baby Angela in heaven and pray for ALL the parents who have lost an infant through miscarriage, still birth or shortly after birth.


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