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I Left My Tears in Texas

by julie on May 5th, 2016

This past weekend I had the privilege of travelling from Ottawa, Ontario to Fredericksburg, Texas to gather with just under 50 mothers of children affected by HIE (hypoxic ischemic encephalopathy). I was contacted in the fall, by Hope for HIE, the premier resource for families whose children have been diagnosed with HIE, to present at the annual Mega Mom Retreat. I had been eagerly anticipating this adventure for months. Many of the moms attending, had been following this blog for a few years and I felt like I knew them well. To meet them in person was very exciting to me.

The interesting thing about gathering with women who have walked a similar path is that there is an automatic connection and recognition. We “know” each other and speak openly and casually about seizures, feeding tubes, trachs and irritability. Depression and anxiety has visited most of us at some point on this journey and we share deeply and receive the words of our sisters with respect and without judgement. For me, as an older mom, compared to the majority of mothers in attendance, I see myself in their tired faces. They are me just a few short years ago. I wonder if they, too, look at my tired face and wonder what their future will hold.

I have had a couple of days to reflect on the 48 hours I spent in Texas and I still struggle with how to put into words, the incredible impact it had on me in a relatively short amount of time. After a journey that included many unexpected hiccups along the way, we (my two Canadian travel companions and our Houston, Texas driver and fellow mom) finally arrived at our destination late Friday night and we were greeted by the mothers who are leaders in the Hope for HIE community. I have a moment etched in my mind of seeing Betsy Pilon walking towards me; a woman I have known online for some time, and how we hugged and how I touched her face as though she might not be real. Turns out she was 🙂 And then Annie, Shawna and Becky came towards me and I felt this sense of completion. I “know” them from the many intimate exchanges on various Facebook pages but to see them standing there as familiar to me as friends back home in Ontario, was both natural and surreal.

I didn’t have any expectations of our time together. My main goal was to present well and have a positive impact in the session I had created especially for my HIE tribe. I decided to offer a session called “From Grief to Gratitude” and I chose to present it in a woman’s circle format. I had never lead a circle of this size and was so impressed at how it all unfolded. I knew I was taking a risk with both the topic and the format but I also knew, from many years of experience, that if the mothers trusted me to hold space for them, that this could be a positive, if not, transformative couple of hours together. Due to the nature of our circle, it would be disrespectful to disclose what occurred specifically. Suffice it to say that through ritual, we tapped into our grief and both spoke our grief and witnessed the grief of our sister-mothers. It was an honour to share this space with these brave women who are so much more than enough!

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We collected our “proverbial” tears in a bowl and then Betsy, who was assigned as the caretaker of our tears, went outside and dumped the salty water into the Texan ground to be further processed.

As the facilitator of this circle and as a Celebrant, I naturally take a position of caretaker to all who participate and yet I also allowed my grief to dislodge from its hiding places and be expressed as I listened to the deep sorrows of mothers who oftentimes cope with far more than they can bear. Grief is interesting in that it often shows up unannounced and can be triggered by the most unexpected things. Just before my session started, I walked into the meeting room and heard the familiar tune of “Somewhere Over the Rainbow” by Israel Kamakawiwo’ole playing in the background. My eyes instantly filled with tears as just a week before I had led a funeral for a little boy who died from a undiagnosed neuro-muscular degenerative disease. This song was played during his Celebration of Life ceremony. I walked towards, Becky, who immediately saw my tears and gave me a hug. How ironic that as I prepared to talk about grief, it paid me a visit without warning.

Although, we left our grief-related tears in a flower bed in Texas, we also shed great big, juicy tears of joy. There was so much hilarity and silliness in this group that I venture to believe that the aftermath of so much laughter to the point of tears was equally if not more healing than our tears shed in grief. Having what seemed like unlimited, uninterrupted time, allowed us to bring down our survival mode by a few notches. We could exhale and engage in the moment not worrying about what tube feed needed to be started and what medication was due. We only had ourselves to look after and everywhere we turned there was a mother from our tribe ready to hug us and sit and chat for a while. What a beautiful gift we gave to one another by our presence at this retreat.

These closing words from my “Grief to Gratitude” session say it all:

Community. Somewhere, there are people to whom we can speak with passion without having the words catch in our throats. Somewhere a circle of hands will open to receive us, eyes will light up as we enter and voices will celebrate with us whenever we come into our own power. Community means strength that joins our strength to do the work that needs to be done. Arms to hold us when we falter. A circle of healing. A circle of friends. Some place where we can be free. Blessed Be. ~by Starhawk

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3 Comments
  1. Love that you closed your session with Starhawk. Hoping to meet fellow HIE moms someday! Sounds like an amazing journey.

  2. Joan permalink

    Once again, I am touched deeply by your words … thinking of you sharing with the other moms, ‘new’ but old friends because of this thing called ‘social media’ .. I picture the laughter and tears, and know that you always bring positive vibes with you. It also makes me think of how it must have been so different for the families of special needs/medically fragile children years ago … they would have definitely been on their own .. no ‘village’ to share and lean on, no book “What I Would Tell You’ to turn to. Again, well done dear Julie.

  3. Marilyn MacDonald permalink

    I had tears just reading this. I so appreciate how you help so many people! This is another reason why I love you so much.

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