Ever feel like you’re just surviving and hanging on by a thread? Yet somehow you muster enough strength to get to the end of the day, collapsing at the finish line, staying asleep there, only to wake up at the beginning of the race come morning?
This feels like my current life stage, it’s my hamster wheel.
But I don’t want to just survive life. I want to LIVE it. I want to notice the beautiful things that each day holds, not just the tasks and goals that are a part of our life. Weighing food, dispensing medicine and working on things with Reagan is part of our daily life. It’s not ALL of our life, even though some days it feels like that’s all our life consists of. There’s more to it and I want to highlight those moments. I don’t want to pretend the hard stuff doesn’t exist, but I want to notice the lovely and be thankful for it.
Thursday Reagan has another surgery. It will be her fifth time going under anesthesia. She’s not even five. Her g-tube is stuck and no one can get it out so it has to be surgically replaced…surgery is also the safest option we were presented with.
I’m determined to find a way to abundantly live in this reality and not just exist. When Reagan was born and we got her GA-1 diagnosis, I kept saying to myself, if we can make it to five years old unscathed, she’ll be OK. The severity of her disorder goes way down.
And now I wish I had paid more attention along the way instead of walking a tight rope, looking down at the scary things below. The scary things happened and I kept looking down, trying to avoid more bad things that could happen if we were to fall. I fight to be just brave enough so fear doesn’t win the day.
And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. – Hebrews 12:1-2
ordinary exhausted parents trying to do extraordinary things for our daughter who needs us to stand, not collapse at the finish line; she needs us to keep looking up at Jesus so we can show her we are living not merely existing.