Friday, March 22, 2013


Last week as I was trying to fall asleep I had a perfect memory of Jonah.  The kind of memory that I have often hoped for.  A memory where I see Jonah fluidly, instead of as a jumble of frozen moments and fractured images.  I closed my eyes and I saw him...climbing up on a chair, wearing his red and black moose shirt and denim overalls, waiting for a doctor to arrive.  He moved around the room opening drawers, and checking cupboards, and for a moment I felt the physical sensation of being his mother again.

It was so vivid and instantly shattering.  It made me angry instead of whole.  It brought me back to the pain that I have tried to set aside, or subdue, or maybe repress.

Tears began to fill the crease between my pillow and cheek.  My shoulders shuddered with each sob.  And then things fell apart.  My strength disappeared and I tumbled into a free-flowing question-filled rant about life.  Here are some of the highlights:

"Why is life so hard?"
"Why can't we just get a break?"
"Why do other people get to just have healthy babies whenever they want?"
"Haven't we experienced enough heartache?"
"Why did Jonah have to die?"
"Why does insurance dictate our life?

Followed by...

"I'm done with this"
"I hate this"
"I can't take it anymore"
"I'm so angry"

Poor Jordan didn't know what to make of me.  Our day had been normal and productive.  Our evening was pleasant and ordinary.  There were no signs of an imminent breakdown.  And suddenly he was at ground zero.  Ground zero looks like me angrily throwing snot-filled tissues across the room while I ask incoherent questions and sob uncontrollably.  What's a boy to do?

What are any of us supposed to do when the world feels overwhelming?

I felt a little crazy that night, and in the morning I wondered why my reaction was so intense.

Obviously I'm still grieving.  Even when everything around me seems to move on, the most important parts of me are still with Jonah.  Life is still hard.  Jordan and I are dealing with incredibly difficult challenges and sometimes optimism and faith and hope seem like a poor substitute for a full-blown cathartic breakdown. 

It feels unnatural to discuss topics like death, and grief, and infertility, while you talk about your weekend at work, or stumble on a friend at the grocery store.  It becomes harder with each passing day.

I haven't been allowing myself to grieve like I used to.  I'm keeping it to myself, and that's not working.  I need to write.  I stopped writing on this blog because I thought I was past the pain, and ready to move forward.  But apparently I'm not.  I'm still knee deep in the struggle. 

I have also stopped writing out of fear.  What if people are tired of my breakdowns?  What if I get stuck in the past, and can't move on?  What if it is too personal?  What if more heartache and disappointment is ahead?

I have to remind myself that I started this blog with a promise to myself: to be truthful, to be authentic, and to write it for no one but myself.  So I will try to write again, for Jordan's sake, and most importantly my own.

There is something about the process of writing— perhaps because it usually takes place in the privacy of one’s own room— that allows and indeed encourages the expression of thoughts one would never say aloud.
Elizabeth Forsythe Hailey, A Woman of Independent Means


  1. (((hug))) I don't have any wise words to share, but I love you.

  2. I always feel uplifted when you share your words. Thank you so much for sharing. You are such a wonderful example to me.

  3. So true. Hoping you can feel peace in the future when you see him fluidly again.

  4. I do like your post . Please kindly to follow my blog back, please.

  5. Dear Julie,
    I check your blog weekly to see if you have written. I am so glad to hear you are going back to it. You see what you don't realize is that you have the ability to put into words what the rest of us are feeling or have felt at some point in our lives. Sometimes a good old fashioned "melt down" is just what we need to reset our selves and get back to one day at a time. Please give yourself permission to "reset"
    I love and admire you so much.

  6. I'm glad you're writing for yourself. That's the most important thing. I found similar comfort as a young widow some years ago. Thank you for letting us share your thoughts. So many times I've said to myself, "Yes! That's exactly how it felt and she explained it so well!" You have a gift for articulating that which is almost impossible to explain and the courage to do so. Even in retrospect, it brings me comfort. You've also given me words to use when talking with others who grieve. It is a strange & difficult companionship, this walk with grief. There is peace to be found along with the gut wrenching and tears that spring so quickly when we are blindsided with memories and pain. May it be yours in abundance.

  7. Hi Julie,
    I just wrote to you but my comment disappeared. Sorry if somehow it did go through and this is redundant. My daughter is 10 months and has TCS. I came across an article your wrote and then your blog and I'm sitting here sobbing and amazed at how mothers of these amazing children are inexplicably linked. How similar we are. How our faith, strength, love and resiliency gets us through each day. My heart is now broken though for your family. For what you've had to endure as a mother. I worry daily about what Landon eats, when she coughs or semi chokes while eating. I worry about her breathing, her ear infections make her throw up repeatedly through her nose and she chokes then as well. I feel like as happy and full of love as I am, a part of me is also living in fear. Fear of what is now your reality. I admire you so much. Although unfair and painful, I do think we were chosen by God for these journeys. I don't quite know why- and just pray that it's revealed to us over time. You are an incredible writer and person. I feel blessed to have come across your story. I wanted to write to you and tell you how much your story has touched me. If you ever want to write someone who will understand what you've experienced- don't hesitate.
    Sending you love and strength and continued faith,

  8. Julie - I just recently found out about your loss of Jonah, and was just devastated for you and your family. I have no words to really convey my thoughts, all I know is I feel a sort of numbness. I had just only days ago learned of another young boy who lost his life because of TCS and then someone posted your story. I am sure I have talked to you in the past - have I? You look so familiar and because I talk to so many families affected by TCS, I am trying to remember. I somehow thought you were in Virginia, though. If you get a chance, pls write me at Japetha at My thoughts are with you. Judy