09/06/2019
My youngest son Declan was born shortly before midnight after a long day spent in the hospital. Our doctor held him up for us to see his wonderful face. I whispered to my husband Steve, “We make beautiful babies.”
The doctor turned Declan toward her and said something through her mask. In a flash, the room filled with nurses and doctors. Through the figures surrounding Declan, I caught a glimpse of a nurse squeezing a blue bag over Declan’s face.
I don’t know how much time passed before they took him from the room and a doctor came to me and said “Your son is very sick. We are taking him to the special care nursery.”
Declan was placed on life support and given two rounds of a medication called surfactant. One of the specialists explained this would line his lungs so that he could hold air. He told us he expected Declan would be going home in three days.
We finally breathed a sigh of relief. Soon he would be coming home to start his life with us and his two year old brother Griffin.
But, after three days a doctor told us he was still struggling to breathe on his own. Now, he expected Declan to go home in four days.
The first week came and went. Declan was now on a feeding tube, oxygen tube and several medications.
The nurses in the NICU worked tirelessly in caring for Declan. They often commented on how strong he was. I spent long evenings talking to the women who attended to my son. I continue to be friends with many of them. Sara, Jodi, Esther, and Myra soothed our fears and made our transition from the terror of Declan’s first moments of life to the daily routine of NICU parents as smooth as humanly possible.
After two weeks we sat down with a pediatric neurologist who had been advising Declan’s treatment. We asked him if he had any thoughts about when Declan might come home.
He replied “I’m not entirely sure he’s going to survive.”
What?
Time stood still for us. No one had said anything about the possibility that Declan might not live. Not once.
The doctor continued, “And if he does survive, I don’t know that he’ll ever walk, or talk, or surpass the intellectual ability of a two year old. Talk to me when he’s nineteen and we’ll see how he’s doing. Maybe he’ll be an olympic wrestler.”
All we heard was a list of nevers. We had asked when Declan might go home. We wanted to start our lives together. Suddenly, we faced a nightmare beyond our comprehension.
Declan did survive. He is a beautiful boy who has his own unique abilities. He loves water, music, Mickey Mouse, and hugs. He has made our world a bigger place and we count every day as a blessing.
He also needs constant care. There is no getting around the fact that we, as a family, face a unique world of challenges. But, so does any patient, and their loved ones, who receives the news that their life will be altered by medical challenges whether temporary or permanent.
Over the last fourteen years, my family has worked with hundreds of doctors, nurses, specialists, therapists, educators and caregivers. I am in awe of those who choose such meaningful work. My family is beyond grateful that they are in our lives. Many of my presentations are devoted to reminding everyone in the audience that my family, and families like mine, could not survive without them. I ask them to hear the thank you, embrace the gratitude that parents like me express and avoid regarding it as background noise.
Through my radio show, podcast, live performances, advocacy work, and fundraising I have had the opportunity to speak with thousands of people across the country. Each of them brings a new set of experiences and perspectives. From them, I have learned that how information is shared can empower an individual's ability to face the road that lies ahead. I have also learned that there are moments when a family can be sent for an emotional tailspin based on what might seem like a run of the mill conversation.
I encourage everyone in my audience to consciously listen to how a family receives information. There is a practical component to everything we talk about in my presentations, workshops, and coaching. For example, I often discuss the impact of tone and attitude. Studies show that patients who have positive feelings about their medical professionals and educators are less likely to take legal action. More importantly, they have more positive outcomes.
Based on the incredible reactions and reviews I have received over the years, my presentations, workshops, and coaching help provide a perspective and direction that promotes a stronger sense of purpose. My clients often send me letters to tell me that the work we did together has made a difference for them, their patients, their students and the families who all provide essential support to patients. It is an honor to know I can make a difference and I am always eager to help as many people as possible.
