Helping Hand Peer Mentor Lisa Ruley describes the familiar kinship of a NICU experience and why she decided to get involved to support other families new to the experience. Her daughter Sloane, now 5, was born at term and faced complications that landed her in the NICU with more equipment and tubes than most of the babies there who were smaller than she was. Volunteering has tremendous meaning for her because only other parents who have been on the NICU rollercoaster really understand the ride.
How did you find out about Hand to Hold?
I had heard of Hand to Hold through the children’s clothing store, Baby Bugaloo. It’s in my neck of the woods and just happens to be owned by my neighbor. Baby Bugaloo has sponsored a few fundraising events for Hand to Hold. Then, while attending the Seton Medical Center NICU Reunion Picnic, I saw that Hand to Hold had a booth set up with information about volunteering.
What made you want to volunteer?
I have been looking for volunteer opportunities, and while there are countless great causes out there, there wasn’t one that I felt especially connected to. When I saw the mission of Hand to Hold, I knew that it was something I could wholeheartedly get behind and help with because of our NICU experience.
What has connecting with other parents meant to you?
To me, connecting with other parents means validation. Having a baby in NICU is an experience that is unique and has an effect on you long after your child has “graduated.” It takes time to learn to cope with that kind of stress. No one can relate to this except parents who have been there.
What would you like to share with other NICU families?
I would like to share that it’s okay to feel cheated out of the experience of having a “normal” delivery or “normal” baby. It’s okay to grieve that loss. As a family expecting a baby, you have this picture built up in your mind of going into the hospital, having an uncomplicated delivery and leaving a few days later with a healthy baby. When this doesn’t happen, it’s devastating. It’s okay to be devastated. It doesn’t mean you aren’t happy to be a parent or that you aren’t completely in love with your child. It just takes a while to find what normal is going to be for your family.
What would you tell parents about being in the NICU? What do you wish someone had told you?
I would like to tell parents to let your support system support you and be specific. We were so blessed to have many family members and friends support us during our stay at the NICU. And while we appreciated so much that people wanted to visit us and show their support, it was always tough to carve out time for visitors when you are working around a NICU schedule, pumping every three hours, etc. I wish that someone would have told me that it was okay to tell that support person that our schedule didn’t leave much time for visiting, but we could really use someone taking our dogs for a walk, or giving me a ride home once my husband had to go back to work, or doing one of the many things that needed to be done. I know now that these wonderful people would have been glad to do any of those things.
How do you think you NICU experience was unique? How did it differ from what the other parents around you were going through? How was it the same?
Our NICU experience was somewhat unique just because Sloane was a term baby. I’ll never forget entering the NICU where the baby’s footprints were displayed. You could pick out her footprint in an instant because it was so much bigger than all of the other babies! She was originally on a high frequency ventilator, so she took up more space and had more equipment than those babies around us. All things considered though, I think our experience was more similar to the other parents than unique or different. We were all on a similar journey. We were learning a new medical language, learning to bond with our babies despite tubes and equipment, and getting to know the doctors and nurses. Also, despite the different reasons we were in the NICU, all of the parents were learning to deal with the stress of having a sick child and riding a roller coaster of emotions. These similarities are exactly why Hand to Hold can make such a difference in the lives of NICU families.
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