She's beautiful and valuable and she's become the 4th child we thought we weren't going to have. -Nathan (Dad)
Please share your story: : Last fall (2014) my wife Heather and I received news that our 4th child, due a few months later, had a terminal disease called Trisomy 18. If she survived birth, we'd probably only have an hour with her. The following months were so dark. We met with doctors and grief counselors who assured us she was "incompatible with life" and referred us to a funeral home to make arrangements. They said the undertaker would be at the hospital to take her in a basket when she passed. We did all we could to take care of the kids during the days, then fall apart and sobbed at night until we went to sleep.
Olivia did survive birth. Contrary to the doctors' expectations, she survived her first day, then her first week, then her first month. She's still alive today and just turned 1 in January! This year has been an entirely new reality for us. We couldn't leave the house for the first part of last year. We must have watched her die and say goodbye to her over a hundred times. There were so many times we called the kids and our parents in to say goodbye to Olivia. She'd turn blue and stop breathing. We'd cry tears of sadness and relief. Then she'd gasp a new breath, color would return to her face, and she'd open her eyes and start again. It as such a rollercoaster.
Somewhere around month 6, her episodes slowed down to just every few days and then only every couple of months. We haven't had an episode for a few months now. In a lot of ways, Olivia is developmentally about the same as a 2-3 month old. She just learned to take a sippy cup. Heather was nursing LITERALLY every 30-60 minutes for an entire year, day and night. She can't hold her head up, so someone's usually holding her. BUT, she has been able to do SO MANY things we never thought we'd see her do - like smile, dance (shaking her head from side to side when she hears music!), and I think we heard her just about laugh the other day. She's beautiful and valuable and she's become the 4th child we thought we weren't going to have.
Our life is nothing like it used to be. Heather and I are in survival mode most of the time. We get 2-6 hours of sleep per night with lots of all-nighters. Olivia gets sick often, and when she does she's right on death's door. We're told by the medical community that she won't live much longer - that she shouldn't be alive or doing any of the things she's doing now. But everyone - us, the medical community, our friends, and many other onlookers are amazed at the difference between what should be and what is actually happening. We're living in the middle of a real live miracle.
The main lesson I think Heather and I are both learning through this is about rest. So much of my life has been spent trying to nail down what will happen before it does. I want to know. I want to remove uncertainty and discomfort at any cost. This situation has made certainty impossible. We haven't made plans for a year. If someone asks us to do something next week, we say "check back in with us next week" because we can't think that far ahead. Many times, even living day to day is too much, even hour to hour - we're learning to live now. The fear we have to cut through to be able to live now without knowing what's about to happen, especially when it comes to the health and life of our children, not to mention our finances, careers, friendships... it's nearly impossible. The fear is debilitating. But the alternative is to give up, and Heather and I don't do that very well. :)
I don't think either of us would give up this last year for anything in the world. I can say that this was the most difficult and painful year of our lives by far - but it's also been the richest. And of course, we have the gift of Olivia - knowing her, holding her, loving her. It's the highest privilege in the world to be trusted to walk her through her beautiful life, however long or short it is.
How has your story shaped who you are today?: This year has made us more present, and i think it's made us more solid, at our core.
What encouraging words would you give to someone who shares a similar story?: When Olivia was in the womb I was afraid to name her. I put it off thinking "she probably won't live anyway". It was all subconscious, but in retrospect I was definitely hoping to not have to name her somehow. That was me, deciding not to live, because living was too painful and too scary.
But that's what living looked like for me at that time. That day, in the womb, my daughter was alive. She did exist. And as her parent, I needed to name her. I needed to talk to her, the same way I did for my other 3 "normal" kids.
Live. Today. You know exactly what that looks like. Yes, it's painful and scary, but that's life. You were made for this: to step straight into this terrifying dark room and to do what you know you have to do.