Given the severity of the condition, the data were not good. As we reviewed the literature, the future that was being painted for our child was disheartening. An abstract of one of the research articles summed up what was in front of us: stating, “with a life threatening anomaly…mortality rate of 40 – 50%… many complications including pulmonary damage, cardiovascular disease, intestinal disease, neurocognitive defects, musculoskeletal abnormalities and failure to thrive… more long-term consequences… GERD, high incidence of esophagitis, Barrett’s esophagus, and oral aversion… If the child were to be put on ECMO [a high-risk treatment that does the work of the lungs and heart for the patient] there is a high incidence of neurological deficits.”
We had to consider the reality of the evidence. Do we want to have this child? Do we want to take this risk?
The biggest risk our child faced was the lack of oxygen in his blood once he was born. If his lungs didn’t have a chance to develop enough to produce enough oxygen, then his heart would work harder to try to make up for the lack of oxygen. The less oxygen, the harder the heart works. The heart will continue to work harder until it fails.
This was not the future we envisioned or dreamed of for our child. What we had taken for granted was no longer certain. In fact, we were being told by the experts that it was not possible. People where telling us to give up, to let go.
Both of us fought the urge to find certainty. That didn’t exist for us anymore. This experience would teach me that it never did. There was no certain path that we could see to having a healthy baby. This diagnosis created an awareness for me that I didn’t have before. The more data we collected, the less certain we became. The many points of data were not telling us what to do. We craved just a bit of information that told us it would be okay (or at least the possibility of it being okay). We were struggling to get to a place where we could accept and embrace the uncertainty.
As we struggled with the uncertainty we hesitated with our decision. During one of our many conversations, our focus and energy switched from trying to forecast the future to accepting where we were and just being in the journey, showing up the best we could. We switched from certainty to clarity. The quantitative data we were reviewing was now being informed by our emotions, desires and experiences, creating context for our decision-making. We began to expose ourselves to each other. No pretending. Our conversation centered on what we cared about and why.
This was helping see a direction we wanted to go. Without certainty, clarity of what we cared about and why was becoming our filter for decision making.
Then, Moira felt a kick. We were at a movie, U2-3D at the Minnesota Zoo, escaping for a moment form the stress of the pregnancy. Moira looked over at me, grabbed my hand and put it on her stomach. “Feel this,” she said. “He is kicking to the beat of the song.”
For Moira, that was it. When she felt the baby kick and move, “That was it for me,” Moira stated. “There was a real live child growing and thriving inside of me. Wow. We really were bringing a child into this world! After that, the choice for me wasn’t about keeping or aborting the child. This was a live person inside me that I could feel moving that I was deeply connected to.”
We realized we wanted to give this child every chance to define his life rather than allowing others to define it for him. The data were defining likely outcomes (based on historical evidence), not what THIS kid’s future would be.
Now that we had reached the point that we were having this baby. Our next decision was how were we going to show up and support our child, ourselves and our relationship. We aligned around doing whatever it took to give him every chance to have the fullest life possible, whatever that meant for him. At the time, we really didn’t know what that would take.
I had told Moira, “If we don’t believe he will survive and do well, then he has no chance. If we believe that he will thrive, then we can at least take an action towards making that happen.” Moira had a hard time accepting this, feeling more that the science/medicine and biology would determine our son’s fate. She thought it was crazy that we could “believe” and that would make a difference. She soon realized, it was the first step towards our ability to act towards what we said we cared about, knowing there were no guarantees. We started to believe.
Without getting clear, how could we make a decision? A decision that impacted us for the rest of our life. A decision that determined if someone had a chance to live, who was incapable of making a decision for them self. We needed to be clear about what it meant for us to commit to this journey. Not what the doctor wanted or thought. Not what the science told us or didn’t. Not what the numbers told us. We needed to declare what we were for and why. That would determine what we focused on. All of the data we had available to us would be irrelevant without that context and direction. We had no control over what happened. We only had control over how we responded.
I didn’t have the biological connection that Moira did. Before the diagnosis, I was a bit disconnected and now felt a strong desire to change that. “One way to do that is to name him,” Moira said. “Yea, that is a great idea,” I responded. The relationship I had with him in Moira’s womb may be the only one we would have. Connection with him was essential.
We backtracked to determine when he was conceived. When did this journey actually start? Our calculations put us sometime while we were in Colorado spending time on Pike’s Peak. That year we were there to participate in the Pike’s Peak Ascent and Marathon. We came up with “Pike.” It felt good. It felt strong and it felt like he was a part of us. From then on in we called him “Pike.”
Once we named him, something shifted in me. I started to have conversations with him, asking him questions, asking Moira questions about him and wondering out loud what he was thinking. I enjoyed talking to him, rather than at him. I started to imagine his personality. I was in relationship with “Pike.”
A switch flipped inside me. I realized that every moment going forward was a gift. A gift to me, a gift to Moira, a gift to our relationship. Now that we were committed to our child’s journey, we needed to figure out the best path forward for us and for him. Our desire was to provide the opportunity for our child to live and thrive in his life, whatever that looked like for him.
To go to the previous entry, please click here.
To go to the next entry in the story, please click here.
To go to the beginning of Pike’s story, please click here.
To find out more about why I am writing the story, please click here.