13 of Life – Worth Every Minute


When babies are born very prematurely we hear from the parents that terms such as “quality of life” begin to be introduced to the conversations about these tiny, vulnerable  babies.  It always makes me extemely wary because it seems that it is almost impossible to judge another persons’ quality of life!  When the medical profession start to do this it we edge closer to deciding that someone elses’ life is  deemed not worthy of being continued due to a “poor quality of life”.  Here’s  a story to help us to realise that no matter what we think, these children can and do survive (with their parents love and support) and teach us how to live life to the full.


Posted by Jess Clark on June 7, 2012

13 years ago Tuesday, I gave birth to a 1 pound baby, after my water broke at 23 weeks. Very few people expected him to live, and we had been holding on desperately to hope that we’d make it far enough that the medical establishment would consider him “viable” (24 weeks) and take drastic measures to save his life. We made it to 24 weeks and 1 day.


Once he lived 72 hours, they started saying he might survive. Pretty quickly, though, they discovered these massive brain bleeds and the terms “quality of life” started getting thrown around. We were 20 years old, shell-shocked and exhausted. We sat and listened to the prognoses, learned how to read the brain scans, and how to become invisible when the big alarms went off and the crash carts came running. 

2 lbs + here, starting to get “better”

We trusted the staff, respected them, and at the same time we had to learn how to live in 2 realities. One: there is no reason he will live. He’s having constant seizures, his brain is a shell, and nothing seems to be improving. Two: God gave him to us, we “feel” like he’s going to live, and our prayers matter. However it might end, we knew we should be praying, hoping, believing for the best. 

Emotional moments when we got to hold him

We’ve lived for 13 years in those realities. The natural and the supernatural. R2 has a spirit, a vibrant, alive spirit, and his broken body doesn’t change that. Every challenge we’ve faced, we have to take in the medical reality and then hold out hope for a greater spiritual reality. We’ve learned that God is good, God is always good, even when the answer is no. We’ve seen R2 learn how to walk, to feed himself, to accomplish so many small things, when there is no medical explanation for why he should be able to, given the extent of his brain damage. 

He has a great sense of humor, and he’s a little bit of a prankster, although his pranks are things like turning on the dishwasher and running away laughing, or closing the door on you. His best friend is his iPad. He carries it everywhere, and sleeps with it if we let him. He’s not making a ton of progress on the communication software, but we’re going to keep working on it. His technological skills are going to be a major asset in that effort. 
He has been obsessively pointing at the whiteboard calendar, at the birthday cake, every day, multiple times a day. He has indicated with much pointing and flapping that, given a group of options, Nemo is the highly exciting and definite party theme. I am so grateful that he’s doing so well emotionally and medically right now, and for his joy, his excitement, his understanding that this is his special day. It was the day the world exploded for us, and it was months and months before we saw any light. But now, 13 years later, it is a good day. 
Happy Teenage Birthday to my tiny Tweety Bird! 

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