Sometimes I have a flash. I’m just going about my day—I’m driving on Highway 394 on the way to work or maybe I’m scrambling eggs in the kitchen, and then I remember: my child lives with two tubes connected to her. My baby has some rare genetic thing that will never go away. And then I feel a little thunderbolt of grief in my stomach, a pinch that just sits inside of me. Sometimes I can’t believe that this is her life, which in turn, makes it our life.
This past Tuesday was the first day of our new in-home nursing care for E. Finally, after no less than thirty phone calls and three meetings and a significant amount of what amounted to (basically) begging, I got our insurance to cover 80 hours a week of skilled care. By a real Registered Nurse.
Our lives are going to get a little easier. Bit by bit, since I guess it takes a while to get all of this up and running. The company has to build a team and that could take a while, because there’s a shortage of nurses in Minnesota. It’s only a few shifts a week right now. But we are getting some help from real nurses, not just the ones Cedar and I play in what I wish was TV. Over time, we will get more and more of their help, and most importantly, we will get help in the night. I’m more than a little burned out on the whole up-at-all-hours thing, and so is Cedar, because he’s been doing a lot of it lately.
On the day that the nursing care started, my friend Sara, who I’ve been lucky enough to have known since I was eight years old, took me out for Thai food for lunch. And then she asked me if maybe I’d like to go kayaking. Yes, as a matter of fact, I did. Wholeheartedly.
We rented two boats and set out for Cedar Lake. It was hot but not too hot. It was bright and sunny and windy and everything good about summer. When we got to shore, we layed on the beach and looked out at the water, which is what I’ve been wanting to do since about 2015. I felt a little bit free, and alive in a way that reminded me just how much time I have spent inside the house lately feeling trapped. It’s funny how that works, how sometimes feeling good can make me aware of how I’ve been feeling otherwise. I cried just a little on the beach because really, I have no shame about things like that. But mostly we talked about love and work and also how we could make our lives more like summer camp (a mutual goal). If anyone has any ideas about this, I’m listening.
So far, some ideas: spending as much time as possible outside (including, especially, eating meals out there), singing around a fire, living in the moment versus planning planning planning. Eating a lot of burnt marshmallows. Staying up late talking. And, of course, cloud watching.
I want to move my whole family to a summer camp. And, if I’m really dreaming, all of our friends, too. I think I could be a great camp director, except for the part where I don’t want to be responsible for the safety of any additional children. Just for now, while things are so precarious with our little E. So I guess that rules out that role.
During my adventure with Sara I paddled that kayak so hard that I got a blister on my hand the size of a penny. Now that’s the kind of injury I’d like our family to get into. Very minor leisure related injuries. The type that require no intervention whatsoever except maybe a Dora the Explorer band-aid and a dab of ointment. What I want for us right now is to accrue the type of injuries and problems where if we did show up at the ER, the staff would very respectfully scoff at us.
E. is doing fine, and has gone more than a week without throwing up. She has to live on the feeding tube for at least three months (but probably more) which now connects to her intestines. We also added this other bag which connects to her stomach, which is called a Ferrel bag. It’s purpose is to help the stomach release pressure. This combination has shifted her seemingly endless cycle of puking.
I’m more than relived that she is suffering less. And the future is, as it always is, uncertain. Whatever happens, it’s clear that she will need a whole lot of help to get back to eating because she is taking nothing by mouth right now. It will probably be, in all likelihood, years.
The photo above is our first bouquet of the summer from our mini garden. A. and I arranged it together—he chose which flowers to use and I cut the stems. We got them all bunched together, hot pink and hopeful, and then sat on the back stoop, admiring them together. Then he asked, completely unsolicited, “Can I give these to my teachers?” Yes, yes, yes. That’s the best question I’d heard in weeks. And so he did, later that morning, although really he hid behind me as I offered it up, because as we approached the teachers, he all-of-the-sudden became shy and afraid, just for a few rare moments.
This is what I was hoping for all along, to grow something bright and flawed and still fantastic, full of life. To remind each other when we need it most, that we cannot hold any of it too tight, that we must, sometimes, let it go.