This is the Room

I went to my first SHARE meeting tonight.  406 days after losing Nelle.  255 days after losing Iris.  Those numbers seem so huge, and yet represent such a small amount of time.

SHARE is a support group for parents who have experienced miscarriage, stillbirth, or neonatal death.  Held at the hospital, it is a chapter of a national organization.  I first heard about the group when I was in the hospital after losing Nelle.  Several people mentioned it; the nurses, and other hospital staff.  The group also has a private Facebook page.  But I left the hospital, sought individual counseling, and the idea of a group of other grieving parents was overwhelming.  I thought “How can I connect with them?  Their stories are not my story.”  My therapist asked me about it a few times, but I told her that I was fine with individual therapy.  After losing Iris, I joined the private Facebook group, but still did not attend meetings.  Earlier this month, I participated in the Walk to Remember, organized by SHARE.  So I finally decided to gather up my strength and attend a meeting.

It did not begin well.  I had parked on the wrong side of the hospital, so I had to walk across the entire building, and the only way to get to the Education Center was by traveling past Labor and Delivery.  Of all wards of the hospital.  Signs pointing in every direction to the mother/baby rooms.  And somehow I also managed to walk past a large screen tv with an ultrasound photo plastered across the screen.  I found the meeting room, already shaky.  One of the group coordinators greeted me, saying that she thought that she remembered me from when I was a patient at the hospital.  I wanted to say “Which time?  The first time I delivered or the second?”  She could tell I was upset and told me to take a deep breath.

I anticipated that the meeting would include introducing ourselves and telling about our losses.  I could hear the shrillness in my own voice as I finished with “And we don’t know why.  We have no answers, none.  A whole battery of tests that showed nothing.”

It was an open forum.  I talked about feeling like I am the person who makes people nervous: that really scary case of two second-trimester losses.  That car accident that everyone looks at, but no one stops to help.  That I still have bad days, and sometimes I have very bad days, and I expect the world to be accommodating, but simultaneously know that they will not understand.  The room was varied; with some losses occurring years ago, and some as recent as a few weeks ago.  Several people in the room had gotten tattoos in remembrance of their losses.  There were moments when I just sat, with tears rolling down my cheeks.

We talked about the postpartum depression survey given at the follow-up visit after delivery.  That survey is so cruel in its composition, asking “Are you sad all the time, for no reason?”  Well, yes I’m sad, for a damn good reason.  During my postpartum appointment after Nelle, I knew what the staff were looking for and I lied so as that I would “pass” the test.  After Iris, I answered truthfully  and then a nurse came in with a concerned look on her face, telling me that I had failed.  I held up my hand and said “Let me stop you right there.  I’m on anti-depressants, and I’m seeing a clinical therapist.”  But it it just one more way in which people are wholly unprepared to deal with baby loss.  Even our own doctors are ill-equipped.  I did let the hospital staff person leading our group that the nurses who were with me during the delivery were excellent.  To this day, my appreciation for the women who were with me during the worst moments of my life is unending.

I left slowly when the two hours had passed.  So much grief and sadness in the room, but we are all members of that tribe.  I spoke to a few people on the way out.  And then had to walk back past the Labor and Delivery ward again to exit the hospital.