From a very early time in Owen’s life, Zach and I made seemingly impossible decisions for him: Do we carry Owen to term? How far do we go with testing in utero? How far do we go with interventions at birth?
When do we stop trying to make Owen survive and instead let him die gently and in peace?
I found every. single. one. of these decisions agonizing, especially the last one. I would examine all of our options endlessly, even after we had already made a decision. I could not reconcile the idea that we were even having to make these choices. After what was probably the tenth time that I questioned Zach about the adequacy of our birth plan and preparation for Owen’s life (or death), he finally laid bare how he felt about it. He explained “The way I see it, we just make every decision we can out of love for Owen, and that makes it the right decision.” From that point on, that’s how we made decisions. We asked ourselves what the most loving decision was, rather than the right one.
Looking back, this was perfect. In situations like ours, there are many options. Very few of them are right or wrong. When Owen was born and the neonatologist asked if we wanted to put Owen on the ventilator, it was hard to say no. Opting out of the ventilator was a movement towards a gentle death, and how could we make a decision that would cause Owen to die? But when we looked at the options, we didn’t feel that intubating Owen was the most loving decision since it wasn’t going to increase the quality of his life in the brief time we had with him. Therefore, it wasn’t the best decision for him.
I struggle sometimes with guilt that we didn’t tell the doctors to do every medical intervention possible to try to keep Owen breathing, to keep him alive as long as possible no matter the cost. What if Owen had been born to another mother, one who would have insisted on intubating him, operating on his various heart defects? Would she have had an extra day with him? Maybe an extra week? But then, I remember: I am Owen’s mother. I would have done anything to save him. I would have given him my own lungs if I could, my own heart. There weren’t any medical interventions that would have given Owen a chance. What he truly needed was for us to love him enough to let him die in our arms, rather than in transport to another hospital or on the operating table. That was the most loving thing for Owen. He went to sleep for the final time on my chest, hearing the same heartbeat that had given him life for so many months, listening to his father tell him how much we loved him.