Recently I was interviewed for our local newspaper. The reporter and I talked for probably an hour and a half. After 15 minutes, however, his recorder died...he was obviously a good listener, though, because he was able to deliver the gist of the story.
At some point during the interview I was sharing how generous people were to us...total strangers...offering things to us we could never afford ourselves, including a generous family from Aspen that offered their private jet to fly us wherever in the world we needed to get Noah a stem cell transplant. He asked me if we had done that...taken the offer, that is...I said no. He asked me, "Why not?" Not in a way that was like, "Why the hell not?" but more like a curiosity question. I said, "Because...when is enough finally enough? What if that procedure hadn't worked, then what?" It's a question I never even considered until further into Noah's hospital quandary.
Fast forward to tonight...I just got done watching "My Sister's Keeper". As a mom of a child that was hospitalized without diagnosis, without any sort of treatment other than the palliative treatment that incurs from a body that slowly shuts down...there is a sense of feeling that the only acceptable answer is a cure. The only acceptable and reasonable treatment is total and complete healing...a miracle...the hope that everything will just go away and be perfect.
And, in my opinion, what happens is that at some point, likely the moment our sweeties are born, the only acceptable action on our part as a parent is to do everything we possibly can to help our children, to save our children, to protect them from harm. The problem is, the junction at which total healing or a cure and knowing that a parent has done everything in their power to save their child is a horrible place. It's horrible because, in my opinion, if the only acceptable answer for a parent is that their child is healed and saved from death, a natural process, what happens to that parent's heart when there is no cure...when doctor's don't have answers...when every rock has been overturned and the outcome isn't pigtails and picket fences and peewee football? It's horrible because it leaves a parent wondering..."Did I do enough?" "What if...?" "If only...blah, blah, blah..."
I hated that we had to choose to put Noah on life support, which, in my opinion, was invented as a temporary breathing aid. We chose it because we absolutely were not convinced that doctors or ourselves, had turned over every rock...I didn't hate life support, itself, but the reality that we were faced with removing him from it at a later date. Some people can live coherent healthy, beautiful lives on life support...Noah's entire body had shut down. He died within a minute...his entire existence depended upon that freaking machine...
People have asked me if I'd do it again. In my opinion, if we were faced with Noah all over again, I would enjoy each day I had with him...at home, in my arms. Hindsight is 20/20, so regarding his specific situation, I'd know what to do now, and likely save him, but say I didn't know...I am at a place in my walk with the Lord that I accept that life includes suffering, and no thanks to Adam and Eve, it includes death. I no longer fear it.
Fighting for a good life is one thing. Living your life to the fullest, in my opinion, is another. Everyone who worked on Noah's case did do everything they were trained and knew to do. The reality, though, is that obviously wasn't enough because medicine is ever-changing and new discoveries are found everyday. Or, was it enough? If "enough" is only measured by the truth that Noah wasn't healed, then, no, it wasn't enough. But, it was enough, because it was their best...it was our best...it was enough because, in my opinion, even though it wasn't the outcome any of us sought, his time was intended here on earth to be short and sweet.
In my freaking opinion, if all of us don't stop to realize that we will die one day, regardless of how, and it may not be when we think it's convenient and it may not be quite like we dream...in our sleep when we're still healthy and early 90's...we'll miss out on the life we've been given with the beautiful people with whom we are surrounded...and we'll miss out on the mountains and oceans, flowers and sunrises, laughter and stars, the beauty with which we've been blessed.
In my opinionated opinion, if we don't embrace death, we'll never fully embrace life and if we don't embrace life, we'll never fully embrace death. We cannot have one without the other. And beauty lies with both...
It is my opinion, though it may not be yours, that I did, along with my husband, everything we could to save Noah...and for us, that included the heart wrenching decision to remove him from life support. I have literally made the most difficult decision I will ever face on earth. I know we are not the only ones who have had to make such a decision and that we won't be the last...but, in my opinion, even that decision was still everything we could do for him.
It was in that moment, in my opinion, when the junction occurred between giving him to God and trusting that total healing happens in God's presence, outside of limited humanity, that I knew in my heart we had done everything...even though there were rocks unturned.
(*Disclaimer: This is my opinion. I am not judging other people who have loved ones on life support. I am also not offering my suggestions to others regarding this decision. I am simply sharing my opinion and my story...my heartache and my hope...and my peace.)