Friday, March 4, 2011

Shared experiences are a salve to the soul

I'm a great believer in the tremendous healing power of talking to someone who has shared your journey. When we were thrown into the previously unknown, extremely frightening world of the NICU, our nurses gave us the name of another couple who had a preemie and strongly encouraged us to call them. (At the time, Chris was the tiniest, sickest baby in the NICU, by far, and no one knew what we were going through.) Their daughter was a 26- or 27-weeker. (Later we learned that they had a preemie son years before, who had died.) Being wrapped up in our own worries, we never got around to calling them. We were extremely fortunate because we had wonderful love and support from our family, friends, and church community, so we didn't realize what we were missing.

Then one day Andrew and Marie (the parents) happened to be at the hospital and stopped by. We joined them in the atrium for a drink and marveled at 1-year-old Maddy. During that brief conversation and the ones that followed, we realized that nothing can replace the valuable gift of being truly understood and sharing experiences.

Yesterday, NPR's  "Talk of the Nation" did a story on how patients or parents are increasingly finding support online. Susannah Fox of the Pew Internet and American Life Project spoke about her report, "Peer-to-Peer Healthcare," in which she studied the ways that patients sought help from peers (often on the internet) in addition to healthcare professionals. Several listeners called in to share their experiences of finding the kind of love and support from others going through the same experience and that doctors and nurses could not provide. Wise healthcare providers realize this value and encourage these connections. (Incidentally, Fox also found that people still rely on their healthcare providers for medical information, which should be encouraging to medical professionals.)

When one mom called in to talk about having a baby with a heart defect and finding support online, she spoke about seeing a photo of another baby post-op, and how helpful that was for her to face her own fears and prepare herself. (She choked up recalling this, causing me to start crying as I was driving to the gym on my lunch hour!) A lymphoma survivor recalled how his wife found another lymphoma patient for him to connect to...and how valuable that was (also that he would never have reached out if his wife hadn't initiated the contact). Caller after caller expressed the great comfort and reassurance they felt by talking to others who had been through similar experiences.

This comment of Fox's really resonated with me: "You will not find a more passionate detective than a mom (or parent) trying to help her child." Chris was born when the internet was still in its infancy...so I couldn't rely on internet support groups. We had to search far and wide for books that even addressed 24-weekers. As I listened to this radio report, I realized how emotional and passionate I am about this issue.

In Chris' early childhood as we got involved at the hospital, we came to know many families who had survived the NICU and lived to tell the tale. We found an intensive, irreplaceable level of love and support from those people. After I had my first miscarriage, we went to a holiday party with those families. It was the only venue I could have entered at that difficult time in my life. I will never forget walking in the door and being immediately immersed in hugs and empathy...so many of those families had experienced their own loss and could understand the pain we were feeling. When one of the families in our group lost their beloved 4-year-old, the rest of us banded around them and did everything we could to help them survive those first agonizing weeks. I love and cherish these other parents because of this shared experience...they are one of the blessings I have received from the NICU experience.

As a result, I am a big believer in reaching out and finding others who have shared our experience...whether this is a life experience (such as living abroad, or biking across the country, or adopting a child) or a traumatic experience (such as the NICU, or having a sick or dying child, or experiencing infertility). No one else can truly understand or provide the same level of support as someone who has traveled the same journey.

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