Kids are going back to school now. I’ve missed the summer. It’s a weird feeling to have an entire season pass you by and feel as though you have been stagnant the whole time. I feel like I’ve gone away to live in a bubble and social media has allowed me to peak into the life I would be living were I not in such a bubble. We haven’t seen our friends in 7 weeks and I’ve left the city of Orange only twice. I come home and sleep and then head back to the hospital where I feel trapped and yet it’s the only place I want to be. I feel so deeply alone and yet the idea of seeing people sounds really exhausting. So for now our friends and family support us through prayer, text messages and baskets of food that keep showing up.
My nephew was in a NICU for a bit and my sister’s nurse said to her - even though there is no clear end date, today we are one day closer to it. This helps me. You know if you’ve ever done distance running what hitting the wall feels like? Well the only way passed that is a choice to change your mental focus. You have to stop thinking about the finish line because that’s what is so overwhelming, you have to focus completely on the next step and that’s it. One more step. Then after a while you’ll start calming down, breathing more rhythmically, your muscles will stop panicking and eventually you’ll look up again and settle back into the pattern of the race.
I’ve hit the wall so many times. It’s the first time in my life where I’ve thought to myself - I don’t think I can do this, I don’t know how to keep going. But I’ve gotten pretty good at calming myself down just enough to make one more day bearable, and so we keep going and we’re starting to look up a bit.
Colette is doing better and has healed from surgery and her infection. I knew it was bad in the moment when she was so sick but looking back I can’t even believe how bad it actually was. It’s a black whole of chaos and grief and I can’t even remember much of it. The feelings come back to me though, when I see the few pictures we have of her during that time and I can hardly believe we all pulled through.
Days are brighter now though. She is starting to eat again and for the most part keeping everything down. Today she takes 8cc’s every three hours…we go home when she gets to 40cc’s. One step at a time.
When we almost lost her, surviving the NICU got put in perspective. I’ll spend all the time we need to in the that sterile room because we are starting to the see the flicker of what might be the light at the end of this crazy long tunnel.
I need a nap. And also a lot of sunshine and fresh air. And also potentially some therapy.
Thank you for all the continued love, support and prayers - it is what’s getting us through.
Also please forgive my writing...my mind is spaghetti.