At 3 days old, my baby already had undergone surgery and been intubated. There were lines and tubes attached to her everywhere. Yet when my sister-in-law, MaryBeth, saw her, she turned to me and said, Shes perfect; shes just perfect.
When people look at 16-year-old Tana today, they still see lines and tubes and lots of gear, including a pretty heavy-duty wheelchair. But then she smiles. It lights up her eyes, spreads from ear to ear and makes everybody else smile, too. That smile is what defines her, not a medical condition.
She cant talk, so she uses sign language to communicate. Fed by tubes, she never has eaten orally and is on a bowel/bladder program. Yet she is filled with joy. Tana comes with equipment, but that doesnt stop her from taking advantage of every moment.
We knew at 20 weeks Tana would be born with spina bifida. We had no idea how extensive the issues would be. There were new complications every day. She wasnt getting off the ventilator. We were talking about a trach and then a G-tube. By the time we took Tana home after four months in the NICU, she had multiple complex medical and care needs. Although most of her problems stemmed from the spina bifida, she also was diagnosed with a brain malformation, a breathing disorder and methicillin-resistant Staphylococcus aureus.
Id been a nurse for a long time but never had taken care of a patient with a trach. I was scared I wouldnt know what to do for her, as a mom or as a nurse. But I learned.
With help from the medical community and a pediatric home care agency, my baby, who had a life expectancy of five years, has lived a remarkably normal life at home, not in a hospital. Tana goes to school, shopping, to the park, to the lake, participates in adaptive sports and has taken family trips to the cabin, Mexico and Disney World.
She also has had nearly 30 surgeries and more critical illnesses than I can count on two hands. Some we managed at home, turning the house into a mini PICU.
Through it all, Tana has been my best teacher. She taught me each child has a diagnosis and set of abilities all his or her own. Each family and situation is different. As professionals, we must give them whatever they need to create their own normal, even if that life is very different from our own.
She taught me we can learn a lot by listening to parents. Once when Tana was hospitalized, by day three she wouldnt get out of bed. The resident told me her numbers looked better, so they were moving her to the peds unit. I said, Are you looking at her today? Really looking? She was in a wheelchair and now she wont get out of my lap. Later that day, she became severely ill and was in critical condition for eight weeks.
Tana taught me how important it is to help kids be kids to enable them to get out of their rooms, participate in activities, go to school, make friends and play with their siblings and pets. Our job as nurses includes giving kids and families training, tools and resources that allow them to have quality of life on a daily basis.
Ive also learned there are times when I need to be a nurse and times when I need to be a mom. Sometimes I know too much. I may recognize sooner than other parents how desperate a situation is and how quickly her condition can worsen. Thats when I need to maintain my composure and perform every single intervention needed to keep my patient safe. When I get to the hospital, I can be a mom and shed tears.
I hope my daughter outlives me, but the mom in me knows someday the nurse in me might not be able to do enough. More than once, Ive told Tana its OK to go if she needs to, and thats a very difficult thing for a parent to say to a child.
In the meantime, we havent stopped living, and we dont live in sadness. And I have learned from my perfect and remarkable daughter how to use my nursing skills to help and encourage others to do the same.