Thursday, April 28, 2016

Lost in a Legacy

Yesterday, I presented at the First Coast Neonatal Symposium.   This was my third time speaking in front of a group regarding stillbirth education.   Each time I speak, the presentation goes well.  People pay attention.  No one is on their phone.  I don't fumble for words.  I just talk about each slide and show the video at the end.   I have received a standing ovation every time.   There are always people who approach me afterwards to thank me for speaking and to tell me how important this message is.  I love feeling like I made a difference.   There's a tiny little bit of healing that takes place on these presentation days - a little piece of my heart's gaping wound that seals with some scar tissue. 

But, the few days leading up to the presentations and the mornings of are an emotional mess.  I don't really have difficulty speaking in front of large crowds - that's actually not a big deal for me. As a teacher, I have a lot of experience talking to people in big groups.   I do get nervous that I'm presenting in front of medical professionals.   I have no background in medicine and I feel very out of place trying to tell this community how to do their job.   I realize that my perspective and experience are what make my presentation so important, but I still struggle with feeling worthy of being listened to.  I am guessing that will come with time and more presentations.   As I do this more and get more positive feedback, I will probably start feeling more confident in the importance and validity of my message. 

What I don't think will ever get better, though, is how my heart feels as I prepare to present.  The hardest part of these presentations is the reason why I am doing them.   I organize my slides and I think of those days in the hospital.  I think of all the things I was able to do and all the things I missed out on.   I think of the living baby I didn't get to have and the silent one I didn't get to bring home.  I write out notes on what I am going to say, and I miss her so much it physically hurts.  Honest to goodness pain in my chest - an empty ache that radiates from the hollows of my heart.   The morning of the last presentation, I was given breakfast before the symposium began.   I sat there, alone at a big round table for ten, trying to will my hand to bring the fork to my mouth.   I couldn't do it.  The few bites I got in sat in my stomach like rocks.   I could only think about how broken I felt.  How absolutely empty.   I was about to speak about stillbirth because my daughter was stillborn.  The death of my first daughter brought me to that point in my life.  It took everything in me to keep the tears clouding my vision from running down my cheeks.  It took all of my strength to hold myself together and not crumble to pieces right there in Banquet Hall 2.   As much as I love to bring a voice to our children, it takes a lot out of me.

It is hard feeling proud of something you do in direct relation to the death of your child.  It's a really tough concept to come to terms with.  Every speech, every email, every Facebook message related to the Letter to My Doctor Snowball, is both a stab and a salve, a paradox of pain and passion.  People often tell me how strong I am to do this.  To write about this journey.  To speak about it so openly and publicly.   And, maybe I am.  But, it sure doesn't feel like it sometimes.  Putting myself out there like I do, I just feel cracked open.  An egg on the sidewalk trying to ooze myself back into my shattered shell while everyone stands around and watches.  

The reality of loss is draining.   I often feel like the only way I can do her justice is to give this blog and the loss community everything I have, but then I have nothing left for anyone else.  Today is Piper's birthday.   I have nothing planned because I spent the last week and a half organizing myself for my presentation yesterday.   We will have her birthday party Saturday, but today is just another day.   She's only two - she doesn't know.   But, I just couldn't get it together because the symposium took everything I had.   It's hard living in two worlds - shouting for my child who can't speak for herself while still giving my full love and attention to the daughter here beside me.  The middle ground is thin and shaky and so hard to balance, and I am really tired.   

I don't really have a point anymore to this post other than to just tell you that what I am doing is equal parts rewarding and painful.  I guess I just wanted you to know.



  1. I'm sure Kenley is so proud of her mommy. You are doing such wonderful things in your daughter's memory, though I know you know this, and it doesn't change the fact that it's super draining and takes so much out of you. I too have trouble with any stillbirth/infant loss related events (like walks and galas). All I can think is, "I'm only here because my son died." And it paralyzes me. Is it the Letter To My Doctor you generally present? Just curious. I'd love to be able to do something in Matthew's honor in my area... Just don't know what... Waiting for whatever it is to be revealed to me. Hugs.

  2. I basically took the Letter and expanded it into talking points. I added slides of platitudes not to say to people and info on grieving a child. Here is a link to the presentation I did at the med school in TN.
    Feel free to watch if you're interested. :).
    I basically just threw myself into charities and such at first, just looking for a way to make a difference. I honestly wasn't expecting the letter to take off like it did, but I'm glad. I will continue following its path as long as I can.
    I am sure something will come along for you too. You're honoring Matthew just by being a voice - and by being his mom. ❤️