I relive the conversation a lot – the six of us standing in that hospital room talking about interventions for Jonah. The possibilities were many, but if any were actually going to be viable our staff needed to be able to work out the logistics, and they wanted me to make decisions about what we wanted beyond what was in the birth plan. At one point I was asked if I understood that ex-tubation in infants – removing the breathing tube – often goes poorly because of the toll it takes on their little bodies. They were narrowing down exactly what I wanted, and without meaning to were pressuring me into taking options off the table.
The perspective I had in those moments is one I carry with me today, regardless of how difficult the day is; Jonah deserved every chance at life. I looked at the doctors and nurses in that room and asked them what they would do for their children at home. I wanted to know, outside of the statistics and hardships, if they were willing to take the opportunity of life away from their own children if they were in my shoes. Not to put them on their heels of course, but to show that I was not the parent who would give in. I look back on the entire process and that one conversation sticks out. It’s one memory that I pull out of my safe to spend time with.
As I learn how to rebuild my own perspective after trying a new approach, it strikes me deeply how much that means to me. With all of the people who were telling us that Jonah wouldn’t get to experience life like the rest of us – and that terminating might have been the best thing for him – it stands out because of what they were deciding was best. If Jonah had been severely delayed we absolutely would have had a hard go of it with appointments, tubes and feedings, his heart, operations… wondering if this cold was the one that would take him. That also means, though, that he wouldn’t know how cold life can be like the rest of us. Jonah would have known joy and love and such a simple happiness for so much longer than the rest of us, and it would be that much longer before he understood life after loss or of a broken heart. As much as we speak of how unique and valuable it is to have the love of a child, that they wanted to take that chance from him hurts my soul. I’m proud to have wanted to see him smile every day. And I’m proud to be his daddy.
My birthday is a couple of days away and I’m having a hard time coming to terms with what it feels like this year. I hurt from the pain of losing Jonah seven months ago and I’m tired from trying to find my normal. Things haven’t gotten easier and they may not ever, but one thing is constant – I just want to feel closer to him. If you’re thinking of us when it passes, do something for me. In however many birthday wishes there may be, it would fill my heart to see his memory in them. Type his name. Maybe draw a little whale. To look through and see his name intermingled with my birthday would bring so much comfort to my heart.
We fought for Jonah to have a child’s love for as long as he was going to be with us and we made every decision knowing that his life would be full, as short or as long as it may be. I pray that we all can take a second to reflect; remember what a child’s love is like in all its bright-eyed and bushy-tailed glory. They have yet to understand struggle, pain, heart ache, and loneliness. The best thing any if us could do is push everything else out and love like Jonah would have, and that’s the best gift I could have asked for