I was told by a person close to me relatively recently that they didn’t agree with some decisions Cassy and I made along the way, but supported us none the less. At the time I needed to pivot to talking about something else, but this is something that’s been brewing in me for a bit now. While I’m thankful for the support and appreciate the incredible strength that it takes to stay somewhat involved while watching someone do something you disagree with, I have to get something off my chest:
Every decision we made was ours alone, and we chose Jonah.
To give context, this part of that conversation was in reaction to what life would have been like had Jonah made it. The perspective this person came from was one of the medical community and how difficult it would be on everyone to work through the type of special needs my son would have had because of the Trisomy 13 complications. It’s pretty common for Trisomy children to experience mental delays, lack of motor skills, many surgeries for ear/nose/throat corrections (Jonah had a bilateral cleft lip and palate), rocker bottom feet, heart defects and many other complications because of the way their bodies developed early in gestation.
I understand that it wouldn’t have been easy. I really do. We’re talking a lifetime of hardship and broken feelings here. But the part of this where I have a different opinion is that the quality of Jonah’s life would have not been worth living. Every day we have quality of life discussions based on where we are now and where we’ve come from, and these things are different from person to person. But to me, any life lived with my son is one worth living regardless of how hard it would have been. During the time my son’s heart was beating he knew nothing but love, and that wouldn’t have changed had he taken a breath of air outside the womb. To have the opportunity to see my child grow and learn or to smile and decide what he likes and doesn’t like is one that I would love to be able to take advantage of. We went through so much heart break to get to the point we did and we fought harder than we knew we could to end up with a fantastic group of people at OHSU who supported the love we had for our son and whatever chance at life we wanted him to have, and every road block we encountered only strengthened our resolve.
For all of the medical advancements we’ve made we still cannot predict miracles, and I’m not going to be the person to put God in a box; I refused to tell my God that I don’t believe in His power. Whatever the reason is, I’ll always be an Almost Father to Jonah because I miss so much the hope to be a part of his childhood. As painful as it is, I’m striving to find my purpose in all of this. One day I’ll look back, and maybe it will take shape or maybe it won’t, but it won’t be because I didn’t take responsibility for the life we would have had together regardless of how difficult it would have been.
I chose Jonah no matter the consequence and no matter the strength it would take. Every day is another chance to affirm or adjust our values and a brand new opportunity to create the life we want for ourselves. On this day and at this moment wherever you are, you have the control to determine what will be. What will you choose?