Finding Words to Heal
For many NICU families, sharing our stories is a powerful tool in our attempt to rebuild our lives after a traumatic birth experience. My husband kept a daily journal during our four month NICU stay, but I was barely able to produce a grocery list! It would be almost three years before I finally put pen to paper (or fingers to keyboard) to try to process the overwhelming, emotional experience. My story begins, “The first time I saw my son was in a Polaroid picture, the lighting bad, the image fuzzy….” These first words still give me pause. I vividly remember my mom taping the picture to the handrail of my hospital bed and the overwhelming emotions that flooded my heart and my mind as I tried to understand and process that my baby was born so tiny and sick.
For me, my journaling came in the form of daily mass e-mails that I would send out to hundreds of family and friends across the country who were following our NICU journey and praying for our family. Today, many NICU families create blogs that serve not only as an efficient and effective communication tool, but also as an important mechanism for identifying and articulating their emotions during a very uncertain and challenging time.
Recently, Kate Hopper, author of Use Your Words (A mother’s guide to writing) and Ready for Air (a memoir about her preemie daughter) led Hand to Hold’s Facebook Chat in which she spoke about how we parents can use our words to help us heal. “There is so much to process and grieve when you have a preemie, even if they leave the NICU healthy,” Hopper said. She encouraged parents who were having a hard time putting their story into words to think about sensory detail. “Is there a certain smell or sound or taste or picture that comes to mind when you think of the time your baby(ies) were in the NICU? Start there,” she encouraged. She also reminded the participants not to worry about grammar or spelling and to just let their minds wander when trying to find a place to begin.
Parents who participated in our recent Facebook Chat shared that writing their stories allowed them to be completely honest. It gave them a chance to deal with their most raw emotions and capture their fears, anger, joy, sadness and confusion. This is, no doubt, an important step in the healing process, and one that is supported by research, which shows that writing about traumatic events for as little as 3-5 times for 15-20 minutes can have profoundly positive effects on physical and emotional health.
Many parents also expressed concerns about their children someday reading about their birth and feeling guilty or sad. While I personally feel it is important for our children to know and understand the challenges they faced at birth because it makes them unique and is a part of who they are, I also understand that it is a very personal choice as to how much a parent decides to share and when they think their child is ready to hear their story.
Recently, my husband decided to read his personal NICU journal to our son who is now age 13. (See Mike’s story.) My husband was surprised at the emotions that came flooding back when he read the first diary entry. It was a tender moment between father and son – one in which our son felt the deep love and connection he has with his dad – a connection that's been there since he took his first breath. For that, I will forever be grateful that my husband found the time, energy and words to capture our NICU journey in such detail.
Whether you decide to share your experience or not, may you find your words to remember and heal.
Kelli D. Kelley
Founder and Executive Director
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My Child Without Label or Limits
When your preemie gets labeled based on a medical diagnosis, how you handle it can make all the difference in the world. Kaleena Berryman gives us her take on her child with Cerebral Palsy.
Connect With Us
There is still time to enter the For the Love of Babies Grand Prize Giveaway which ends Friday, April 11, at 5pm CT. Families are invited to set up a fundraising page to tell their story and raise money on behalf of fellow NICU and bereaved families. In addition to other prizes, the top fundraiser may select their favorite NICU to receive the grand prize worth more than $5K including breast pumps, a kangaroo care chair, medical equipment, books, professional development and more! It's a neat way to give back to the hospital who cared for your little one.
Thank You for Amping Up Your Impact!
Thank you so much for spreading the word and helping us amp up our impact on behalf of NICU and bereaved families. This year, we more than doubled the participants and funds raised through Amplify Austin, March 20-21, 2014, a 24-hour giving festival that raised a whopping $5.7 million for charities all over the city!
Thanks for Your Support
Become a Helping Hand Peer Mentor
Volunteer to support a fellow NICU parent no matter where you live. Most support is provided via email or phone. Go through training online, submit a quick background check and receive support throughout the process from our Family Support Navigators.
For Healthcare Providers
Hand to Hold offers two resources exclusively for NICU health professionals. First is Hand to Hold's NICU Resource Library, a collection of educational materials available by subscription for NICU families in English and Spanish. Endorsed by the National Perinatal Association, these materials complement Family-Centered Care practices. We also offer brochures, posters, newsletters and fliers to help healthcare professionals connect families to the free support Hand to Hold offers.
Read more Hand to Hold Supporter Updates.