Capture Your Grief: Day 14. Express Your Heart

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I had a hundred ideas on what to write today, but couldn’t focus on just one.  I’m very disjointed and disorganized right now (my thoughts, my life, my purse…). But when I got home today, I opened the mailbox to pull out a surprise little package that solidified what I wanted to tell you.  Today, I just want to express the extreme love, respect and admiration I have for the people at the hospitals we’ve been involved with on our journey.  The doctors, nurses, social workers and other staff made all the difference in our journey and in Zoey’s life.  There are too many to mention by name. And I don’t even know some of their names. But I want to tell you just a few stories.

At one ultrasound early on– before we even had an official diagnosis– I remember just crying.  I apologized to the doctor and said I didn’t know why I was crying like that.  She patted me on the hand and simply said “because that’s your baby”.

Our nurse, Jenny, who honored Zoey during her half-marathon a few days after Zoey was born.  From the moment she called me to introduce herself and set up our first appointment, I knew we were safe with her.

Our NICU nurse who stood by us through a seemingly endless wave of doctors and therapists during Zoey’s first few days, just to reassure us we were making the right decisions.  The same nurse who lovingly helped us bathe her and arranged for us to take her outside– when I still didn’t know if she’d ever get to leave the hospital and I desperately wanted her to feel the sun on her cheeks.

Our hospice nurses.  These people give their lives to pediatric hospice.  Let that sink in for a minute.  They go in to house after house to meet child after child.  They become part of their family.  And they say goodbye over and over.  But they just keep loving these kids and their families.

A few weeks ago I was able to attend a program put on by Cardinal Glennon where I toured the hospital, went on “rounds” and met with doctors, nurses and patients.  I toured the Bob Costas Cancer Center, watched a neurosurgery, met with the autism center and a plastic surgeon.  What they are doing medically is incredible. But what really stood out to me was the passion all of these people displayed for what they were doing.  Their eyes lit up when you asked them questions.  They were all so dedicated to helping our kids and to serving the whole family.  On the rounds, we were able to witness a team removing a tumor from a child.  Before we went in, one of the nurses was explaining that it can be very difficult to see– you’re seeing a child at their most vulnerable.  I pulled her aside and told her that I honestly didn’t know how I would handle it because I’d lost my daughter.  She grabbed me close to her, said “then you’re with me” and held my hand as we walked in and she explained what was happening.  She didn’t know me.  She didn’t know my story.  But she wanted to make sure I, a random person on this tour, was okay.  It was like that over and over that day.  I wish I could fully express what an incredible experience it was.

During the expressive therapy exercise at the grief retreat Joe and I attended, where we created “our world”, we had to choose things that represented our life now.  Joe and I immediately locked in on a figurine of Squirt the turtle.  It became a joke the rest of that afternoon that I was going to steal the turtle.  I showed one of the social workers the artwork my friend created for Zoey’s headstone featuring a similar little turtle.  And today in the mail, I opened a package with that little turtle inside.  And I laughed.  And then cried.  And was reminded once again just how much these people give and just how much they truly want to help.

One of the things that stuck out from my tour at Cardinal Glennon was a comment made that “we can’t cure every child, but we can care for every child”.  I witnessed this repeatedly during Zoey’s life and again since her death.  They knew they couldn’t save Zoey.  But they loved her anyway.  They respected her life.  And they do it again and again.  They see so much hurt, so much pain.  But they never looked at our story as a failure.  Because love is not failure.

From the bottom of my heart, thank you to the people at Cardinal Glennon, St. Mary’s BJC’s hospice, and Children’s Hospital. You cared for me and my child and you continue to do so more than a year later.  You are beautiful and remarkable. Thank you for honoring her life.  Thank you for being there at our darkest moments.  For helping us keep our head above water and stitching up our broken hearts.  And thank you for that little turtle– and everything it represents!


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