Preemie Parent Alliance at NANNLike many parents who have had a preemie or lost a baby, I felt an urge to support others who were facing similar struggles.  Our family had been through infertility treatments, a high-risk triplet pregnancy, bedrest, micropreemies, three extended NICU stays and ultimately the death of our daughter, Zoe, four months after she was discharged from the NICU.

We started a non-profit, the Zoe Rose Memorial Foundation in 2008, and took baby steps to find our niche within this vast world of prematurity.  Because of the work we have done over the last six years, we have had experiences and opportunities that would not have been possible had we not decided to start our organization.  The work has been helpful to others and healing for me in many ways.

Our outreach with the Zoe Rose Memorial Foundation has been very important to me.  In the beginning, I wanted everyone to know Zoe’s story and that I was her bereaved mother.  I was headstrong and determined for Zoe to continue to live as actively as her sisters were even though she was no longer here in body.  My belief was that everyone who had ever experienced the loss of a child should not have to hide it and they should all know that they were not alone.

A lot of good has come from my passion and countless people who never met Zoe have been touched by her infectious smile.  What I did not expect was how being embedded in the world of prematurity and infant loss was actually hindering some parts of my recovery from Post-Traumatic Stress Disorder (PTSD).  By defining myself by my loss and holding on so vehemently to my work, I became detached from other parts of my life that are even more important, namely my marriage and my own personal healing.

Working so hard to keep Zoe alive gave me tangible ways to hold on to her, it gave me purpose and in some ways gave me a reason for her death.  More than one person has commented over the years that I don’t have to do this work.  But at the time, I did.  If I stopped, I feared I would forget her or that I did not actually love her as much as I thought I did.  Supporting other moms was my lifeline to the daughter I could not hold anymore.  I was doing this in her memory, for her, for every other grieving mother.  Or was I really doing it for me?

I watched an old episode of the TV show, “Friends”, the other night. One of the storylines was about there being no such thing as a selfless good deed because inevitably we feel good about ourselves when we help someone else.  There is nothing wrong with that. However, if your sole motivation for helping or supporting someone else is so you can feel good, then that is a clear sign that you have a lot of healing yet to do, and maybe it is time to step back a little.

The realization about this is very recent for me.  I have been in treatment for PTSD for the last two years and one of the things we often discuss in my sessions is how adversely affected I was by being surrounded by the tragic circumstances of others.  I was not able to separate myself from the lives of others.  I would experience deeper depression, heightened anxiety, continual thoughts of fearing for these parents, that they weren’t getting the help they needed and that their lives would fall apart.  I truly felt it was my responsibility to save them.  This was not healthy.  This was hindering my own healing.

If we are to truly help others, it has to be about THEM, first and foremost.  As we often say to our NICU moms and dads, you must take care of yourself or you will not be the mom and dad your baby needs.  The same holds true in supporting others.  If we are not in a healthy space ourselves, can we truly meet the needs of others?

Not everyone will agree with me and I’m not saying this is the case for everyone either. I am simply sharing my own reality as a cautionary tale for others who may think by supporting others they are healing themselves.  In actuality, being constantly reminded of your trauma without processing the trauma is not healthy.  If you find that after an event at a NICU or a two-hour chat with a loss mom that you have no energy to deal with anything else for several days, you may want to listen to that warning bell.

Everyone heals in their own way, in their own time.  Doing less or even taking a break for a few months, maybe a few years, does not make you a failure.  It does not mean you didn’t love the baby you lost.  It does not mean you do not care about others.  Rather it is a courageous step in your own healing process.  It certainly has been for me.

Am I leaving the world of support? Not at all. But, I am drawing up my boundaries; I am realigning my priorities in the proper order, and calling on others to help carry the weight of our work.  I am choosing to ride the waves of grief with my husband, paddling the raft in tandem.

I don’t need to hold on to Zoe so desperately.  She was never lost, she is always right here with me.  Her spirit wraps itself around me like a warm hug.

This page's content was last updated on Apr 5, 2018 @ 2:41 pm