While we were learning about all of the physical defects Jonah would have, Cassy and I were told we needed to come up with a birth plan. For most families, this has a lot to do with who they want in the room or what order they want things to happen after their child comes. For us, this was as much about letting the medical staff know that we knew what we were getting into as it was to give instructions for all of the possibilities – if he came and did well (‘was vigorous’, as they called it), if he came and was fighting – both struggling or winning that battle, and if he was gone before he came. It took us weeks to get all of this down in a way we were comfortable, and had so many hard decisions that I’m still amazed we were able to get through it.
When the time came for the logistics, however, the staff thought it left something to be desired. After a long, hard fight to get the epidural to take effect, a team of five doctors and nurses pulled me into the room next door to have a meeting about how all of this would work. We wanted to reserve the option of intubation for Jonah if he was doing well otherwise, feeling like we were already giving up on him if we didn’t fight for him to have every opportunity to make it. Feeding tubes, breathing mechanisms, immediate open heart surgery – they were all on the table. We had also decided that we didn’t want him to be monitored during labor itself, for many reasons, and if they needed to check we were not to be told in any way about the status. This is a pretty controversial part of the process and there’s no right answer for those on the outside – the right decision here is the one that family chooses, and we’re comfortable with that. After ten minutes or so of conversation, we came to discussing how they would know if his heart was still beating because they would need to know whether or not to have medical tables down the hall available and machines primed for use. We landed on our nurse (who was absolutely amazing, by the way), using a hand-held monitor with the volume turned down low enough that we couldn’t hear it and then update the staff from there. On our room board was the ‘Plan For the Day’, where they would have the most up to date information about the plan of care. After she listened for his heartbeat they brought in an ultrasound machine – we both knew instantly what that meant.
Every team member kept their poker face, showing no reaction to what had to have been one of the hardest parts of their job. I can’t imagine being in that place, participating in this incredible feat of life, and then knowing that these parents will go home empty handed. Before the real pushing began, Rae wrote three simple words on that board that are symbolic of every day life – Hold sweet Jonah. For the hospital staff, this meant stand down; we wouldn’t need any of the equipment. Measurements and weight would happen but weren’t completely necessary, and every single one of those people had to have been left in pieces even if just for a minute. For us, we knew that meant he wouldn’t be coming home. It’s hard to say that we didn’t know it was coming because Trisomy babies born breathing are rare and Trisomy 13 children even more so. But our faith in the possibilities and our hope that our son would get to meet us kept us focus on that chance that maybe – just maybe – we would be in that lucky few. Why not us?
Obviously our plan held something different, still to be determined. ‘Hold sweet Jonah’ was all we could focus on for the next six hours, and it’s what I try to remember every day moving forward. Those three words weren’t only about our plan of care – they were about focusing on what we have left. Every single day we deal with the garbage of this world be it the shooting in Orlando yesterday, the failing health and minds of family members, dealing with weight and food problems, or loss in any form and every single day we have the opportunity to make a decision for ourselves to focus on what is still there. It breaks my heart to be jealous of other families and their little blessings, but we still had those six hours. We still have our family and friends who have been invaluable during this entire process. And we will always have the memories of bathing and clothing him, cradling and rocking him. This is the curve ball – expectations that turned out very different than we thought. When it comes, we can either watch it pass us by or we can take a swing and see what happens. The curve ball is one of the hardest pitches to hit in a sport where being successful three times out of ten puts you in the hall of fame. Read that again – being successful three times out of ten puts you in the hall of fame. You don’t have to handle everything well. You don’t even have to handle half of it well. Just make contact, put one foot in front of the other, and see what happens. It could be the difference for any one of us as it’s had an impact for me many times already, just by taking a swing. Three times out of ten.
Why not you too?