I was up at 2:30 this morning worrying about what Kevin and I will do if insurance coverage for those with pre-existing conditions would again be denied. Or what we would do if it were to cost a zillion dollars to have bad insurance? I kid you not my anxiety around this does not go away. It just sits below the surface.
I thought about Jimmy Kimmel’s monologue about his infant son’s cardiac condition and treatment. I watched it last night holding Grace on my lap. I cried throughout. I feel for him – the grief, the horror, the vulnerability, the gratitude. The standing in a room full of people worried about your child and the utter helplessness of knowing you are the least informed person in the room. I find myself jealous of his ability to thank the nurses and doctors and therapists who were there so publicly. I would love to sing the praises of members of Grace’s team to a national audience. They are just as deserving. I started planning my speech in my head- because that’s what you do at 3am.
I thought about how Grace hasn’t complained about the first bras I’ve ever bought her. I researched so much to find something soft, comfortable, nothing to poke her, etc. etc. They sent the bras beautifully wrapped, bright yellow ribbon tied on the outside. We opened them together. Grace chewed on the ribbon- not exactly what they had in mind I’m sure. But I guess we had our mother/daughter moment! I wondered if her not complaining means I found the right ones?
I thought about confirmation Sunday at church just a few days ago and wondered what that will look like for Grace in 4 short years.
I wondered if I’m doing enough anywhere.
I thought about how on Saturday it had dawned on me that if Grace was a typical 11-year old I could have left her alone for a few minutes to run to the grocery store. I honestly don’t know if I’d ever thought about it before.
I wondered if we’d be able to keep Grace healthy so she can have surgery in 2 weeks. (Kevin was coughing beside me at that point). I wondered if this would be the last surgery she’d need for her mitrofanoff. I worried that my insurance through the state is only guaranteed to cover her through December, then who knows what will happen.
I went over the points of the dance recital meeting I went to last night for Graham in my head. I thought that maybe having a boy dancer is easier? I thought about how much I enjoy that he dances. I thought about how much I hate that we won’t be around for the class dance pictures.
I worried about work. I thought about grabbing my computer and sending emails right then and there. But, I didn’t want people to know I was up in the middle of the night worrying so I kept trying to go back to sleep.
I thought about how epilepsy touches everything that we do.
I thought about how we could plant a few vegetables in the back yard this summer and how that would be good for Graham.
I laughed at myself because I’ve been wishing for some time and space just to process things. Life. Grace. Graham. Work. Home. The pressure has been relentless. It shows no sign of letting up. The 2:30 am wake up…perhaps that was the time and space I’d been hoping for. But I’d come to no conclusions, and I didn’t really feel better, so maybe that wasn’t it.
What actually made me feel better was a sign in our kitchen I glanced early this morning. We’d picked it up at Hobby Lobby about a month or so ago. It states “Grace changes everything”. Our Grace wasn’t the original intent of the maker, and I’ll never find a “Graham changes everything” sign although it’s also true. The thing that made me smile was the unspoken words that Kevin and I exchanged when we saw the sign. We were getting it- no question. Frankly, I think it could have been horrid looking but that simple statement reflects our reality, reminds us that we are not in charge, and is just a truth we have to embrace. Fighting against it does us no good. We are left to do what we can, where we are, with love, fierceness, perseverance, and hope.